Privacy and DNA Fingerprinting News

This file includes links to papers published by Eubios Ethics Institute, and some other organizations, in the first section. Next it includes topical extracts from EJAIB and EEIN between January 1994 - 2006 (older news items are in separate files). Last date of updating is referenced in the main News page. Latest news and papers is at the bottom of each of the two sections.

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Abbreviations for journals
Eubios Ethics Institute home page

Related Papers from Eubios Ethics Institute Publications

HUGO Ethics Committee Statement on DNA Sampling: Control and Access (March 1998) EJAIB 8 (1998), 56-7.
Ethical Guidelines for Analytical Research on the Human Genome/Genes (Japan, effective from 1 April, 2001)
Fundamental Principles of Research on the Human Genome (Japan)
Japanese concept of familial privacy & genetic information - Fumi Maekawa & Darryl Macer EJAIB 9 (1999), 66-9.
Commentary on Maekawa & Macer - Masahiro Morioka EJAIB 9 (1999), 69-70.
Australian Empirical Study into Genetic Discrimination - M.F. Otlowski, S.D. Taylor, K.K. Barlow-Stewart EJAIB 12 (Sept. 2002), 164-7

Genetics and Social Justice - Ann Lewis Boyd EJAIB 12 (Sept. 2002), 167-71

Commentary on Boyd - Masahiro Morioka EJAIB 12 (Sept. 2002), 171

Legal Aspects of Genetic Data Banking in Germany - Juergen Simon and Susanne Braun EJAIB 12 (Sept. 2002), 171-6

EJAIB 13 (2003), 99 HUGO Statement on Human Genomic Databases
EJAIB 14 (2004), 82-85 Privacy versus public interest in developing human genetic databases - Baoqi Su and Darryl Macer
Macer, DRJ. (2003), Genetic information and the family in Japan, pp. 855-859 in Encyclopedia of the Human Genome (Nature MacMillan, 2003).

Access & benefit sharing in population based research: Indirect benefit sharing as a model of regulation - Juergen Simon & Cristina Blohm-Seewald , EJAIB 14 (2004), 199-203.
Kenji Matsui and Reidar K. Lie, Privacy shakes Japan’s statistics on health and welfare, EJAIB 17 (March 2007), 41-49.
Masahiro Morioka, Commentary on Matsui and Lie’s Paper, EJAIB 17 (March 2007), 49.


The Genetic Privacy Act and Commentary is available, written by George J. Annas, Leonard H. Glantz, Patricia A. Roche, Health Law Department, Boston University School of Public Health. (The Genetic Privacy Act and Commentary is also the Final Report of a project entitled Guidelines for Protecting Privacy of Information Stored in Genetic Data Banks which was funded by the ELSI program of the Human Genome Project, Office of Energy Research, U.S. Department of Energy, No. DE-FG02-93ER61626 ).

Please note that there has been misreporting of the existence of a law in Denmark protecting genetic privacy. This follows an enquiry by Sev Fluss of WHO to the Danish Ministry of Health, following reports in the EEIN reporting references in a number of major science journals. To put the record straight: There is no Danish law on genetic privacy. On April 25, 1991 the Danish Parliament requested the government to table a bill which would introduce a ban on the use of genetic tests by insurance companies among others. But so far agreement has not been reached on the wording of the bill, and it is still in committee stage.

On privacy see the comments at the end of the next section. On the use of DNA fingerprinting in crime see AJHG 53 (1993), 1158-60.

The use of genetic markers to aid the conservation of wild relatives of crops is analysed in PNAS 90 (1993), 10623-7.

In Japan DNA fingerprinting has been used in 180 criminal investigations over the last 3-4 years, but has only been used 12 times as evidence. It is more common to use blood typing and other methods however; Yomiuri Shimbun (13 Jan 1994), 15. In the UK confusion over evidence had led to a retrial of a man convicted of rape only through DNA evidence. The US National Academy of Sciences is beginning another study on the statistical variations of DNA fingerprints; Nature 367 (1994), 101-2.

The use of genetic techniques to confirm that the remains thought to be of the Tsar of Russia (the Romanovs) were in fact their remains is P. Gill et al., "Identification of the remains of the Romanov family by DNA analysis", Nature Genetics 6 (1994), 130-5, 113-4; Nature 367 (1994), 580. A genetic study on the origins of Polynesians is discussed in Science 263 (1994), 32-3. The family tree of European bears obtained via genetic studies is discussed in Science 263 (1994), 175. Such studies were used in conservation efforts. The use of DNA fingerprinting for whales, Nature 367 (1994), 726-8; and chimpanzees, Nature 367 (1994), 692-3, is also reported.

A general discussion of simple repeat sequences in DNAs, and the finding that they are not replicated in a simple manner, is in R. Wooster et al., "Instability of short tandem repeats (microsatellites) in human cancers", Nature Genetics 6 (1994), 152-6; A.J. Jeffreys et al., "Complex gene conversion events in germline mutation at human minisatellites", Nature Genetics 6 (1994), 136-45, 114-6.

The US DOE ELSI program is supporting the production of five reference books for judges to use in assessing the use of genetic technology; Human Genome News (March), 1-3. The should be produced at the end of 1994. They will include: Use of forensic DNA evidence; genetic testing and gene therapy cases; neuroscience evidence in competency, and in addiction cases; general medical practice guidelines.

A general debate on forensic uses is Nature 368 (1994), 285-6; New Scientist (29 Jan 1994), 51-2; CMAJ 149 (1993), 464-6; Lancet 343 (1994), 474. See a book review of DNA Fingerprinting: State of the Science, in Biotechnology 12 (1994), 294; and other reviews in TIBTECH 11 (1993), 517-9. DNA testing is also being used to identify rapists in the former Yugoslavia, JAMA 271 (1994), 745. A book review of John Avise, Molecular Markers, Natural History and Evolution (Chapman & Hall, 520pp., £75) is in New Scientist (5 March 1994), 42-3. The use of DNA fingerprinting for ants, Naturwissenschaften 81: 34-6; seagrass, PNAS 91 (1994),, 1049-53.

A Californian court has ordered the use of DNA analysis of a mentally handicapped child in order to assess claims that he was mentally handicapped as a result of workplace chemicals, or whether it is Fragile X; Nature 369 (1994), 597. Californian legislators have also passed another genetic discrimination bill, to try to prevent insurance testing - though it must be verified. The court use of DNA fingerprinting is discussed in New Scientist (16 April 1994), 12-3; Nature 369 (1994), 351. The possibility of misuse is mentioned in BMJ 308 (1994), 874-5 (see EEIN 4: 39).

A book review of A.W. Branscomb, Who Owns Information? From Privacy to Public Access, Basic Books, 1994, 241pp., US$25, is in Nature 369 (1994), 715. It looks at the ethical and legal issues raised by new information technologies, and argues for better laws.

A review is S.D.J. Pena & R. Chakraborty, "Paternity testing in the DNA era", TIG 10 (1994), 204-9. The use of DNA fingerprinting to look at parent-offspring conflict in a bee is described in PNAS 91 (1994),, 5143-7.

The UK has decided to set up the DNA database of criminals, that has been discussed over the past year, Nature 370 (1994), 588-9. The USA is also likely to set up a national database, to supplement those of eight states who have already begun one. The use of stored Guthrie cards as DNA banks is discussed in AJHG 55 (1995), 196-200.

The US is considering laws to regulate laboratories conducting DNA fingerprinting, Nature 370 (1994), 588. The O.J. Simpson case in the USA has increased interest in DNA fingerprinting cases, GEN (August 1994), 1, 30. There are a number of commercial paternity and forensic tests conducted with such tests. About half of the US states have DNA testing laboratories. An alternative to restriction fragment polymorphism studies is the use of the PCR with hypervariable probes. One problem is false positives because it is so sensitive.

In Japan a person was released early, after 12 years of a life sentence, due to a challenge over the reliability of DNA fingerprinting that had been used in his conviction; Yomiuri Shimbun (2 Aug 1994), 27.

The Council of Europe's draft Bioethics Convention seeks to ban genetic testing for insurance and employment purposes, Science 265 (1994), 175. A computer program to help keep E-mail accounts private is causing controversy as it was put on Internet for copying, and the US government may still regard this encryption software as not for export, New Scientist (11 June 1994), 22. Privacy is discussed in Insights on Global Ethics (June 1994), 1,4-5. Methods to protect the privacy of computerised patient information in special cards is described in JAMA 272 (1994), 187-9; on patient records, see also, BMJ 308 (1994), 1654.

A French government committee has decided that a 3 year privileged period could be given in the data stored in DNA databases, by the scientists who make it; Nature 370 (1994), 4. On uses of DNA testing for microorganism detection, JAMA 271 (1994), 1741; Lancet 344 (1994), 232-33.

A favourable comment on the use of DNA fingerprinting is Science 265 (1994), 1015, following front page coverage in the New York Times in mid August of the use of DNA analysis to prove the innocence of 3 persons incarcerated for rape. A commentary claiming their is no longer any scientific questions about the reliability is Lander, E.S. & Budowle, B. "DNA fingerprinting dispute laid to rest", Nature 371 (1994), 735-8. There has been high media coverage of the DNA evidence in the O.J. Simpson murder case, Scientific American (Oct 1995), 36-7; Science 265 (1994), 1352-4. The general question of medical samples in sexual assaults is discussed in Med. Sci. Law 34: 185-7+.

The National Academy of Sciences is re-investigating the techniques, Science 265 (1994), 1163; and a paper suggesting ethnic groups do not affect the calculations is Budowie, B. et al., "A reassessment of frequency estimates of PvuII-generated VNTR profiles in a Finnish, an Italian, and a general U.S. Caucasian database: No evidence for ethnic subgroups affecting forensic estimates", AJHG 53 (1994), 533-9; see also pp.587-8. A study finding that <10% of the measured molecular diversity is attributable to "racial" differences based on a study of 257 RFLP loci in Caucasian, African American, Chinese and Cheyenne, is Dean, M. et al. "Polymorphic admixture typing in human ethnic populations", AJHG 55 (1995), 788-808.

The use of DNA fingerprinting to study paternal investment in birds is Nature 371 (1994), 698-700; PNAS 91 (1994),, 9641-5; and diversity in rhinoceros in J. Heredity 85: 261-6.

The use of DNA fingerprinting studies found that a woman who claimed to be Anastasia, the missing daughter of the last Tsar of Russia, was not her, as reported earlier, Nature Genetics 6 (1994), 130-5. However, there are still some who debate this, as with DNA fingerprinting in general, Nature Genetics 8 (1994), 205-6. A paper which traces spinocerebellar ataxia type 5 in descendents of the relations of President Lincoln of the USA gives him a 25% chance of having the disease, Ranum, L.P.W. et al. "Spinocerebellar ataxia type 5 in a family descended from the grandparents of President Lincoln maps to chromosome 11", Nature Genetics 8 (1994), 280-4. Although the people alive gave consent, it makes us ask whether the genes of historical figures are open for examination - is there any privacy after death?

Debate on forensic DNA typing is in Nature 372 (1995), 398-9; JMG 31: 896; NEJM 331 (1994), 1099; Lancet 344 (1994), 1563; Science 266 (1994), 201-3.

The use of PCR to examine many different things, from meat safety to meat species, is being widened, GEN (15 Oct 1994),8-9. The use of DNA fingerprints for testing fish species is reported in New Scientist (1 Oct 1994), 21.

The privacy of medical records in the UK and Europe is reviewed in Wald, N. et al. "Use of personal medical records for research purposes", BMJ 309 (1994), 1422-4. A book review of Donaldson, M.S. & Lohr, K.N., eds., Health Data in the Information Age: Use, Disclosure, and Privacy (National Academy Press, £32.95, 257pp.) is in BMJ 309 (1994), 965.

There is continuing debate in the UK over the police DNA fingerprint bank for convicted criminals, GenEthics News 4 (1995), 3, 10.

Letters on the technical reliability of DNA fingerprinting are in Nature 373 (1995), 98-9.

DNA testing has been used in an attempt to sex the last remaining wild Spix's macaw, so that a corresponding mate can be released from captivity to attempt to let them bred in the wild. The DNA is isolated from feathers, to avoid the trauma of capture, Nature 372 (1994), 583. It is also being used to reveal illegal trade in hawks, Nature 373 (1995), 275.

A report on the difficulties the FBI has in handling fingerprints is New Scientist (11 March, 1995), 21. Better computerised systems are being developed for identification. No doubt, DNA fingerprints will also be used, but as can be seen in the controversy in the O.J. Simpson trial in Los Angeles, there are still potential problems with collecting blood samples.

DNA fingerprinting is being used to identify which animal skins were used for matching parchments together in the Dead Sea scrolls, New Scientist (14 Jan, 1995), 5. A review of the basis of DNA fingerprinting is NEJM 332 (1995), 534-5.

There have been debates in several countries over the publication of CD-ROM lists of national telephone directories, over the privacy issue (though since the lists are already published and persons can be unlisted this is not much of an issue), and over the copyright to the information. The 4 CD-ROM set for all of Japan has just been advertised, for about Y120,000. In the UK, a US company has disputed British Telecom's copyright claims, New Scientist (4 March, 1995), 22.

More comment on the New Zealand's Minister of Health's breach of privacy is in BMJ 310 (1995), 421-2.

A military judge in Honolulu, dismissed charges against two Marines who refused to follow Department of Defense orders to participate in mandatory DNA collection, in a ruling on 25 May. The judge ruled that pertinent military regulations do not authorize the punishment of those refusing to participate in the program and that the procedures for implementing DNA collection needed further clarification. On the O.J. Simpson trial and DNA evidence, Newsweek (15 May 1995), 48.

Another case of genetic analysis of dead people to ask what genetic disease they suffered from is being considered, in the cause of dwarfism of Toulouse-Latrec, Nature Genetics 10 (1995), 128-30. The admissibility of DNA evidence is discussed in JLME 23 (1995), 106; Science 268 (1995), 371. A survey of DNA testing laboratories in the USA is AJHG 56 (1995), 1477-86; and of databanks, McEwan, J.E. "Forensic DNA data banking by state crime laboratories", AJHG 56 (1995), 1487-92. The UK databank of criminals has begun, NS (25 March 1995), 7. The economic value of forensic science is assessed in Science & Justice 35 (1995), 1-4. DNA testing was used to show the origin of tears of a statue of the mother Mary in Italy; Nature 375 (1995), 668. The use of DNA testing to mark original works of art, including cartoons is reported in NS (1 April 1995), 22.

The US Equal Employment Opportunities Commission has made it illegal for employers to refuse to employ people for genetic reasons, GenEthics News 6 (1995), 1-2. A copy of the draft US Genetic Privacy Act and a commentary is available on-line as described in the editorial; NS (22 April 1995), 4. A European proposal is Sandberg, P. "Genetic information and life insurance: A proposal for an ethical European policy", SSM 40 (1995), 1549-59; and on confidentiality in Europe in general, BMJ 310 (1995), 1024. Privacy in computing is discussed in Newsweek (15 May 1995), 42-3; Science 268 (1995), 628-9; NS (1 April 1995), 7 (6 May), 22. Europeans are mixed and slow to get on Internet, SA (May 1995), 35. On video surveillance and privacy, JME 21 (1995), 104-5, 115.

Use of DNA tests for bacterial typing is described in JAMA 273 (1995), 1598-604; Lancet 345 (1995), 1308. DNA fingerprinting in plants is in HortScience 30 (1995), 109-12.

The US Equal Employment Opportunities Commission declared in March that under the Americans with Disabilities Act (1990), a genetic susceptibility to disease is a protected disability within the meaning of the law. This decision confirms the views that the law should cover genetic discrimination; Nature Medicine 1 (1995), 385. Also covered in the law is HIV carrier status, and the law is a useful means to protect work-related discrimination. India is developing a law to protect persons with disabilities, Lancet 345 (1995), 1431; BMJ 310 (1995), 1556.

The case of the New Zealand Health Minister's public disclosure of patient details on the media is discussed in Otago Bioethics Report 4 (July 1995), 12-5. On breaches of confidentiality, BMJ 311 (1995), 528; Health Law Can 15 (1995), 91-96.

A commentary is Pokorski, R.J. "Genetic information and life insurance", Nature 376 (1995), 13-4. It includes a description of the ways that risks are classified.

The question of whether Queen Victoria was a legitimate child, because the hemophilia gene mutation that arose in her children was not in her parents, is the subject of a new book, Queen Victoria's Gene. The question is whether her hair can be provided for DNA analysis, unless her tissue remains were dug up which is very unlikely! If she was illegitimate, another person and family should have been the Kings and Queens of Britain! A paper on the issues in population genetics is Baird, P.A. "Identifying people's genes: Ethical aspects of DNA sampling in populations", Perspectives in Biology & Medicine 38 (1995), 159-66. A letter reporting the finding of Polynesian mtDNA in Malagasy , Madagascar, is in Nature Genetics 10 (1995), 377-8.

Openness about Alzheimer's disease is discussed in Lancet 345 (1995), 1497. Patient confidentiality and information is discussed in BMJ 311 (1995), 4-6; and child information registers in Brit. J. Obs. & Gyn. (1995), 474-7. The use of medical information by computer networks raises major concerns about privacy, CMAJ 153 (1995), 212.

A review of how Francis Galton put a scientific basis to the criminal use of fingerprints as a method of identification is Genetics 140 (1995), 857-60.

A minireview of concerns about the reliability of DNA fingerprinting, is Lancet 345 (1995), 1586-8. The use of PCR with short tandem repeat loci as a method for reliable DNA typing is demonstrated in Hammond, H.A. et al. "In utero paternity testing following alleged sexual assault", JAMA 274 (1995), 1774-7. The use of DNA analysis to estimate the time of death of a human body through the known succession of certain insects enter a dead body which can be used to help estimate the time a body has been dead, SA (July 1995), 17-8.

A technique for identifying bacterial species is Martijn van Steenbergen, T.J. et al. "Genomic DNA fingerprinting by restriction fragment end labeling", PNAS 92 (1995), 5572-6. Technical notes on detecting Dinosaur DNA are in Science 269 (1995), 1191-3.

The use of a certificate to maintain privacy is called for in Earley, C.L. & Strong, L.C. "Certificates of confidentiality: A valuable tool for protecting genetic data", AJHG 57 (1995), 727-31. The use of existing databases in morbidity and mortality studies is discussed in AJPH 85 (1995), 1198-9. A review for policy discussion is Hudson, K.L. et al. "Genetic discrimination and health insurance: An urgent need for reform", Science 270 (1995), 391-3. Insurance discrimination for victims of domestic violence is reported in the USA, Lancet 346 (1995), 690. On identity cards, Modern Law Review 58 (1995), 702-13.

On March 15, 1995 the U.S. Equal Employment Opportunity Commission (EEOC) released official guidelines clarifying the meaning of disability as used in the Americans with Disabilities Act (ADA) of 1990. The guidelines extend ADA protection to individuals who experience employment discrimination based on genetic information related to illness, disease, or other disorders. The ADA defines a person with a disability as one who has a physical or mental impairment that substantially limits a major life activity, has a record of impairment, or is regarded as having an impairment. Employers who make adverse employment decisions based solely on genetic predisposition are regarding the individual as having an impairment, which is covered in the third part of the definition. Thus, these employers would be in violation of the ADA. [Copies of ADA Guidelines: Write to EEOC; Office of Communications and Legislative Affairs; 1801 L St., NW; Washington, DC 20507], Human Genome News (July/August 1995),7(2), 4.

In New Zealand Privacy Commissioner concluded that the Minister of Health breached the Privacy Act when she released health information about a patient to the media to combat his claims, Christchurch Press (20 Oct. 1995), 3; (24 Oct. 1995), 2. Mrs Shipley, the Minister remains in her post. On the reverse angle, a paper, Annas, G.J. "The health of the President and the Presidential candidates. The public's right to know", NEJM 333 (1995), 945-9; JAMA 274 (1995), 797-9. A book review of Helen M Kingston, Queen Victoria's Gene: Haemophilia and the Royal Family, is in BMJ 311 (1995), 1106-7.

A review of Potts, D.M. & Potts, W.T.W., Queen Victoria's Gene: Haemophilia and the Royal Family (Alan Sutton 1995, 160pp., £17) is Nature 378 (1995), 99-100. The review disputes the conclusion of the book, in favour of Queen Victoria's legitimacy.

The European Commission is planning encryption rules to police information on Internet, Nature 377 (1995), 275; and private E-mail is already searched, Newsweek (16 Oct 1995), 49. On the increasing use of technology to monitor people, SA (Nov 1995), 36, 42. The use of forensic methods to identify body remains in Haiti is reported in Nature 377 (1995), 278. In general on forensic science, Nature 377 (1995), 300. DNA testing for human papillomavirus is debated in Lancet 346 (1995), 717-8.

The text of the UK General Medical Council booklet "Confidentiality" is in BME 112 (1995), 8-11. A case involving disclosure of patient medical records in a law case in Canada is in Lancet 346 (1995), 1218; see discussion of confidentiality in Lancet 346 (1995), 1173, 1217; BMJ 311 (1995), 1240-1, 1272; NEJM 333 (1995), 1419-22; NS (18 Nov 1995), 7. Confidentiality is being discussed in Canada, CMAJ 153 (1993), 1502-6, 1647-49; BMJ 311 (1995), 1591; and in Australia, BMJ 312 (1996), 74.

Consent issues are reviewed in Clayton, E.W. et al. "Informed consent for genetic research on stored tissue samples", JAMA 274 (1995), 1786-92. Storage of samples and privacy issue expand as more banks of various cells etc. are made, JAMA 274 (1995), 1806-7; AJHG 57 (1995), 1499-500. Internet is also being used to solicit research subjects for genetics research, AJHG 57 (1995), 1255-6. Confidentiality is not assured on Internet, SA (Dec 1995), 88-91; NS (28 Oct 1995), 8. Genetic testing and health insurance issues are discussed in Nature Medicine 1 (1995), 720, 731; and cases of genetic discrimination in Science 270 (1995), 1422-3.

On the confidentiality of health records, BMJ 312 (1996), 316; Lancet 346 (1995), 1632; 347 (1996), 62. A new European directive is now in force, which provides stricter protection than many individual countries laws, BMJ 312 (1996), 197-8. It covers all patient health care records, and states have 12 years to ensure they follow it for all cases, and 3 years for computer records. A US court challenge may change the access of researchers to DNA databanks, for example the US military collection, Nature 379 (1996), 385; Science 271 (1996), 440. California has made a new Senate select committee on genetics and public policy, Nature 379 (1996), 577. Broadcasters sometimes breach confidentiality, making us think about what controls are appropriate, BMJ 312 (1996), 280. There has been a breach in Australia, BMJ 312 (1996), 73.

The difficulties of protecting children with chronic disabilities in the USA with competitive health insurance is discussed in JAMA 274 (1995), 1866-9. A special issue of JLME 23 (4, 1995), 309-81 including papers on genetic privacy and discrimination, with further comments on genetics and ethics. On privacy: Caulfield TA, "Practically confidential: legal and ethical dilemmas in practice", Can Fam Physician 41 (1995), 2025-2027; Natarajan, A. "Medical ethics and truth telling in the case of androgen sensitivity syndrome, CMAJ 154 (1996), 568.

A review of a recent court case is Weir, BS "DNA statistics in the Simpson matter", Nature Genetics 11 (1995), 365-8. On the use of DNA fingerprints and statistical associations, PNAS 92 (1995), 11741-5, 12031-5.

An editorial on the disclosure of test data for Huntington's disease information to patients is Burgess, MM. & Hayden, MR "Patients' rights to laboratory data: Trinucleotide repeat length in Huntington disease", AJMG 62 (1996), 6-9. Even if the information is not clinically useful, not giving the information to a patient may create distrust in the relationship. A book review of Huntington's is JAMA 275 (1996), 491-2. A paper arguing that mispaternity should be informed to the male partner of women is Ross, LF. "Disclosing misattributed paternity", Bioethics 10 (1996), 114-30.

Further study on the DNA of the Romanov's, the brother of Tsar Nicholas II, shows that the grave is in fact that of Grand Duke Georgij Romanov, Nature Genetics 12 (1996), 339-40, 417-20; Nature 380 (1996), 484-5.

There is controversy of the court-martial of 2 soldiers in Hawaii, and another in continental USA, because they refuse to contribute a DNA sample to the US Dept. of Defense DNA bank, Nature 380 (1996), 570. The concern is being supported y the Council for Responsible Genetics, and the Government has modified some of its rules. There are still ethical doubts about the restrictions on use and compulsion of collecting.

These moves come at a time in the USA when a US law on genetic testing has been modified so as not to exclude insurance companies using all genetic information, but there will be a general exclusion, Nature 380 (1996), 91, 374; Science 271 (1996), 1235, 7. A letter on genetic testing and insurance is Nature 380 (1996), 384-6. There are also calls for monitoring of gene testing in the UK, NS (10 Feb 1996), 3, 12-3.

A study of cases of genetic discrimination is Geller, LN. et al. "Individual, family, and societal dimensions of genetic discrimination: A case study analysis", Science & Engineering Ethics 2 (1996), 71-88. They sent out about 28,000 questionnaires to individuals at risk of a genetic condition and parents of affected children, and received 917 responses, of which 216 were followed up with telephone interviews. The examples are discussed. See also Mehlman, MJ. et al. "The need for anonymous genetic counseling and testing", AJHG 58 (1996), 393-7.

In the summary of the HUGO Annual Meeting below one of the papers looks at obtaining informed consent in the process of sampling a complete birth cohort. Those interested in the questionnaires and consent form should contact Dr. Diana Chase, Genetics Unit, Westlakes Research Institute, Moor Row, Cumbria CA24 3JZ, UK. On confidentiality see Science 271 (1996), 1780; BMJ 312 (1996), 578-9, 653-4; AJHG 58 (1996), 436-8; and in telecommunication, Lancet 347 (1996), 487-8; Nature Medicine 2 (1996), 374-5; NS (9 March), 11, (16 March 1996), 44-7, (6 April), 48. Video privacy is discussed in a series of papers including Thomas, T. "Covert video surveillance - an assessment of the Staffordshire protocol", JME 22 (1996), 22-5; and two responses, p. 26-8, 29-31.

The US National Research Council has fully supported the use of DNA profiles as forensic evidence, Lancet 347 (1996), 1321; Science 272 (1996), 803; Nature 381 (1996), 103. There are some statistical understanding concerns that will need to be clarified in court cases, NS (8 June 1996), 7. The use of PCR for DNA identification has been developed, AJHG 58 (1996), 1239-46. The need for DNA analysis after fire is raised in Science & Justice 36 (1996), 69.

Light sentences of being confined to base for 7 days have been given to two soldiers who refused to provide DNA samples for the Dept. of Defense, rather than discharge, in a decision that has been applauded, Nature 381 (1996), 663. Efforts to make laws to prevent genetic discrimination are reviewed in Nature Biotechnology 14 (1996), 547; Lancet 347 (1996), 1400. On the use of secret codes for data protection, NS (8 June 1996), 9. Letters on whether it is possible to obtain informed consent for all genetic research are in JAMA 275 (1996), 1085-6.

Use of PCR to identify endangered black caviar is reported in Nature 381 (1996), 197-8.

US politicians have passed a law preventing insurance companies from discriminating against people based on genes, Nature 382 (1996), 392, 489; GeneWatch 10 (August 1996), 2; BMJ 313 (1996), 72; Science 273 (1996), 299, 727. It was passed as part of a health insurance bill; Lancet 348 (1996), 398. More efforts are desired however. A review of the health information privacy laws in the US states is JAMA 276 (1996), 1921-7. The increasing use of computers raises more problems on privacy, JAMA 275 (1996), 1821-2, 276 (1996), 270-2. So does the use of smart cards, SA (August 1996), 40-5.

A review of the second US National Research Council on forensic science and DNA fingerprinting is AJHG 59 (1996), 497-500; also Eur. J. Human Genetics 3 (1995), 139-44. There are some population differences, AJHG 57 (1996), 272-4.

Lapham, EV et al. Genetic Discrimination: Perspectives of Consumers", Science 274 (1996), 621-4. In a study of the perceptions of 332 members of genetic support groups with one or more of 101 different genetic disorders in the family, it was found that as a result of a genetic disorder 25% of the respondents or affected family members believed they were refused life insurance, 22% believed they were refused health insurance, and 13% believed they were denied or let go from a job. Fear of genetic discrimination resulted in 9 percent of respondents or family members refusing to be tested for genetic conditions, 18% not revealing genetic information to insurers, and 17% not revealing information to employers. They called for more study. A paper looking at the US Genetic Privacy Act is AJLM XXII (1996), 109-34. On the effect of genetic information on health care, CMAJ 155 (1996), 539-40. A philosophical paper on is Gardner, J. "Discrimination as injustice", Oxford J. Legal Studies 16 (1996), 353-67.

The FBI is spending $48 million project on DNA databases, Nature Biotechnology 14 (1996), 691. FBI forensics is trying to use mtDNA, Nature Biotechnology 14 (1996), 1211; and a case has been successfully used in the USA, Nature 383 (1996), 114. Mitochondrial DNA offers several potential advantages over cellular DNA for forensic analyses, experts say.

New Jersey has outlawed genetic discrimination, Nature 384 (1996), 202. On the use of human genetic information, BMJ 313 (1996), 1223; Nature Medicine 2 (1996), 1162, 1173. The question whether insurance companies should have access to patients' medical records is debated in BMJ 313 (1996),1261-2; GenEthics News 13 (Sept/Oct 1996), 3. In the UK the new Advisory Committee on Genetic Testing said companies should be barred from offering genetic tests directly to children under 16 years old, NS (7 Dec 1996), 6. In Canada researchers claim that psychological research will end because of restrictions proposed in the code of conduct for research (which are available on the Internet), NS (7 Dec 1996), 7. The researchers would have to debrief their subjects after each study.

A series of reports on DNA fingerprinting are in Human Genome News, July-September 1996; 8 (1, 1996), 1-7. A US project to alert 1000 judges to the potential surge of cases involving genetic questions and provide resources to help them evaluate and adjudicate these issues has begun. Resources include working conversations with judges, lawyers, and science advisors and a Web site for rapid information exchange and links to the courts. The 1996 working conversation, was attended by about 35 federal and state judges and a dozen science advisors, was held July 1-7 on Cape Cod, Massachusetts, in the town of Orleans. Also taking part in the dialogue were legislators and other policy leaders involved in ELSI.

The German man of the last century, Kaspar Hausar has been found by genetic testing not to be a noble heir, Nature 384 (1996), 302. A report on physician-patient confidentiality in Turkey is JAMA 276 (1996), 1375-6.

A number of genetic privacy bills are being considered in the US Congress at the moment. In Nov 1997 the New Jersey Governor signed a Revised Genetic Privacy Act (SB 695). It prohibits the use of genetic information to determine access to health care coverage, regulates the use of genetic information by life and disability insurers, prohibits employers from using genetic information in hiring, and requires that genetic testing be conducted only with written, informed consent. It no longer defines tissue samples or results obtained therefrom as the "property" of the individual from whom they were obtained, a revision that was much sought by the pharmaceutical and biotech industries.

British life insurers requested genetic-test results, in The Association of British Insurers (ABI) policy statement on Feb 18, 1997, asserting that applicants for life cover should be required to declare known genetic test results, Lancet 349 (22 Feb 1997). The Association's ruling makes a dispute about the scope of the forthcoming European Bioethics Convention likely. The statement was made only 5 days after an announcement by the Council of Europe that the Convention is to be opened for signature at a ceremony in Oviedo, Spain, on April 4. Bioethics Convention Article 11 says that "any form of discrimination against a person on the grounds of . . . genetic heritage is prohibited". There would be a 2-year moratorium during which life-insurance applicants would not be obliged to take genetic tests. Also during that time, genetic-test results would not be used in considering claims for life policies linked to mortgages of up to ’100, 000. Also on the UK moratorium, Nature 385 (1997), 663. A review of how gene tests can alter insurance is Newsweek (13 Jan 1997), 44-6; NS (18 Jan. 1997), 12-3; also Pokorski, R. "Insurance underwriting in the genetic era", AJHG 60 (1997), 205-16. A study of the US insurance industry policies to homosexuals is AJLM XXII (1996), 477-502.

DNA analysis of infanticide victims in Roman baths have found that many were males, not females as expected, and the technique may be used in the future for study of historical practices, Nature 385 (1997), 212-3. Use of PCR-RFLP analysis to identify Pseudomonas syringae genetic diversity is reported in AEM 63 (1997), 498-505. Moa genes may be introduced into chicken embryos in new research, NS (4 Jan. 1997), 5.

Papers on medical confidentiality: Pellegrino, ED. "Secrets of the couch and the grave: The Anne Sexton case", Monash Bioethics Review 16 (1) (1997), 21-34; Dodek, DY. & Dodek, A. "From Hippocrates to facsimile. Protecting patient confidentiality is more difficult and more important than ever before", CMAJ 156 (1997), 847-52. There are concerns in France that a new computer system may compromise patient privacy, Nature 386 (1997), 6. General medical privacy regulations are under discussion in the USA, Nature 386 (1997), 533. In the UK there are concerns that expanded video surveillance may be against European privacy laws, NS (12 April 1997), 3, 4. On access to raw data, BMJ 314 (1997), 749-50.

The Council for Responsible Genetics (USA) filed an Amicus Brief in Dec. 1996 in cases of genetic discrimination and workplace privacy, GeneWatch 10 (4-5) (Feb 1997), 1, 4. A new bill, the Genetic Confidentiality and Nondiscrimination Act, which would outlaw genetic discrimination was introduced to the US Senate in March, Nature 386 (1997), 203. Some researchers claim it would impose unreasonable responsibilities and procedures on them. On an alternative proposal from the NIH ELSI working group, Nature 386 (1997), 312. A report and extracts of the New Jersey Genetic Privacy Law (17B: 30-12) is in GeneWatch 10 (4-5) (Feb 1997), 10-1. Comments on the UK insurance associations policy on gene testing are in GenEthics News 16 (Jan-Mar 1997), 3; BME 126 (1997), 6-7; they will seek results of genetic tests on people seeking life insurance policies more than 100,000pd, BMJ 314 (1997), 625.

A committee report is Rothenberg, K. et al. "Genetic information and the workplace: Legislative approaches and policy challenges", Science 275 (1997), 1755-7. They recommend to prohibit employers from using such information, or seeking it. A company, GeneLink (Margate, NJ. USA) is offering to bank people's DNA for US$175 for up to 25 years for future use in genetic analysis, Nature Medicine 3 (1997), 258. Phylogenetic analysis in courts is reviewed in Science 275 (1997), 1559-60.

The rate and pattern of sequence substitutions in the mitochondrial DNA control region is of central importance to studies of human evolution and to forensic identity testing, and it is measured in Nature Genetics 15 (1997), 363-8. It had an empirical rate of 1/33 generations, or 2.5/site/Myr. This is roughly twenty-fold higher than estimates derived from phylogenetic analyses.

The use of DNA testing in disasters is shown in Olaisen, B. et al. "Identification by DNA analysis of the victims of the August 1996 Spitsbergen civil aircraft disaster", Nature Genetics 15 (1997), 402-5.

Papers on medical confidentiality: Pellegrino, ED. "Secrets of the couch and the grave: The Anne Sexton case", Monash Bioethics Review 16 (1) (1997), 21-34; Dodek, DY. & Dodek, A. "From Hippocrates to facsimile. Protecting patient confidentiality is more difficult and more important than ever before", CMAJ 156 (1997), 847-52. There are concerns in France that a new computer system may compromise patient privacy, Nature 386 (1997), 6. General medical privacy regulations are under discussion in the USA, Nature 386 (1997), 533. In the UK there are concerns that expanded video surveillance may be against European privacy laws, NS (12 April 1997), 3, 4. On access to raw data, BMJ 314 (1997), 749-50.

The Council for Responsible Genetics (USA) filed an Amicus Brief in Dec. 1996 in cases of genetic discrimination and workplace privacy, GeneWatch 10 (4-5) (Feb 1997), 1, 4. A new bill, the Genetic Confidentiality and Nondiscrimination Act, which would outlaw genetic discrimination was introduced to the US Senate in March, Nature 386 (1997), 203. Some researchers claim it would impose unreasonable responsibilities and procedures on them. On an alternative proposal from the NIH ELSI working group, Nature 386 (1997), 312. A report and extracts of the New Jersey Genetic Privacy Law (17B: 30-12) is in GeneWatch 10 (4-5) (Feb 1997), 10-1. Comments on the UK insurance associations policy on gene testing are in GenEthics News 16 (Jan-Mar 1997), 3; BME 126 (1997), 6-7; they will seek results of genetic tests on people seeking life insurance policies more than 100,000pd, BMJ 314 (1997), 625.

A committee report is Rothenberg, K. et al. "Genetic information and the workplace: Legislative approaches and policy challenges", Science 275 (1997), 1755-7. They recommend to prohibit employers from using such information, or seeking it. A company, GeneLink (Margate, NJ. USA) is offering to bank people's DNA for US$175 for up to 25 years for future use in genetic analysis, Nature Medicine 3 (1997), 258. Phylogenetic analysis in courts is reviewed in Science 275 (1997), 1559-60.

The rate and pattern of sequence substitutions in the mitochondrial DNA control region is of central importance to studies of human evolution and to forensic identity testing, and it is measured in Nature Genetics 15 (1997), 363-8. It had an empirical rate of 1/33 generations, or 2.5/site/Myr. This is roughly twenty-fold higher than estimates derived from phylogenetic analyses.

The use of DNA testing in disasters is shown in Olaisen, B. et al. "Identification by DNA analysis of the victims of the August 1996 Spitsbergen civil aircraft disaster", Nature Genetics 15 (1997), 402-5.

The mutation rate in mitochondrial DNA varies, Parsons, TJ. et al. "A high observed substitution rate in the human mitochondrial DNA control region", NatGen 15 (1997), 363-6, 327-8. In general on correlations in Caucasians at forensic DNA loci, Heredity 78 (1997), 583-9.

On the US use in forensics, Medicine, Science and the Law 36 (1996), 43-51; and in Europe, Benecke, M. "DNA typing in forensic medicine and in criminal investigations: a current survey", Naturwissenschaften 84 (1997), 181-8. In Europe most countries are making databases, but not France and Germany. On databases in the USA, AJPH 87 (1997), 336-7. Protein diagnosis can be better than DNA tests, NS (31 May 1997), 20. A report on how DNA typing can identify bodies of air crashes is NatGen 15 (1997), 329-31, 402-5. Disease in Egyptian mummies can also be studied, Lancet 349 (1997), 1760-3; and in South American mummies Chagas disease has been found, Lancet 349 (1997), 1370. DNA fingerprints can be recovered from actual fingerprints, Nature 387 (1997), 767.

On genetic privacy, Lemmens, T. ""What about your genes?" Ethical, legal and policy dimensions of genetics in the workplace", Politics & Life Sciences 16 (1997), 57-76; Glazier, AK. "Genetic predispositions, prophylactic treatments and private health insurance: Nothing is better than a good pair of genes", AJLM XXIII (1997), 45-68. The US Congress is debating a bill on privacy, NatMed 3 (1997), 481. The results of Euroscreen for Insurance are summarized in Euroscreen 7 (Spring 1997), 1-3. General medical confidentiality is discussed in Lancet 349 (1997), 1306, 1608; JAMA 277 (1997), 1189.

A report by the Task Force on Genetic Testing of the US NIH-DOE ELSI group, Promoting Safe and Effective Genetic Testing in the United States: Principles and Recommendations, is on the www <http://www.med.jhu.edu/tfgtelsi/promoting>. On the subject, see Human Genome News 8 (Jan-June 1997), 1-3; Science 277 (1997), 308-9; Lancet 350 (1997), 272; Nature 388 (1997), 216. An anonymous survey of US insurers found some companies would not insure someone with a gene for hereditary nonpolyposis colorectal cancer, NatMed 3 (1997), 710. Also on genes and insurance, NatBio 15 (1997), 708. In the UK the Data Protection Registrar may expect to receive more complaints as companies start to do more tests, NS (28 June 1997), 4.

On the Canadian Health Information Protection Act, Health Law Review 6 (1997), 8-11. A review paper is Holm, HJ "Genetic information and investment in human capital", J. Health Economics 16 (1997), 435-52; and on security and privacy, PNAS 94 (1997), 2789-92. In an issue of privacy, The Christchurch City Council proposed to use crime video cameras that are around the city for also checking and enforcing fines upon dog owner's who failed to clean up after their dogs, Christchurch Press (5 August, 1997), 3. There has been opposition, though it may be not fears of privacy but fears of prosecution.

A review of the National Research Council report on forensic use of DNA evidence is PNAS 94 (1997), 5497-500. The Australian Harness Racing Council has approved use of hair samples for DNA tests on horses from January 1998, with blood not being necessary. The US Trotting Association is also switching. Koalas have low mitochondrial variation, Genetic Research 69 (1997), 25-33.

The US is tightening the protection of medical data privacy, and researchers will face criminal sanctions for illegally obtained data, Nature 388 (1997), 611. The UK has released guidelines allowing police to bug anywhere, including medical clinics, to obtain criminal information, BMJ 315 (1997), 446. There is powerful satellite resolution technology which can also monitor human activity from space, NS (2 Aug. 1997), 18-9. A medical smart card is being tried in Australia, Lancet 350 (1997), 420.

Israel is setting up a genetic database after adoption scandals with missing Yemenite babies in late 1940s and early 1950s, BMJ 315 (1997), 626; Nature 389 (1997), 322. Revelations are finding mothers and children using DNA fingerprinting. An Indian case of DNA fingerprinting to convict a rapist has been questioned, Nature 389 (1997), 109. On newborn screening for familial uretueric reflux, Lancet 350 (1997), 396-400; and whether we should screen for gestational diabetes, BMJ 315 (1997), 736-9.

A survey of attitudes among 238 first degree relatives in USA, to autonomy and confidentiality is Benkendorf, JL. et al. "Patients' attitudes about autonomy and confidentiality in genetic testing for breast-ovarian cancer susceptibility", AJMG 73 (1997), 296-303. 95% believed a person should be able to have genetic testing even if the doctor opposed it. African American women were less concerned about protection of privacy than Caucasians.

The case of the sailor who was granted a waiver to the general military DNA profiling policy is GeneWatch 10 (Dec 1997), 1-2. On drug testing policy, Devon, D. "Drug testing of health care workers: Toward a coherent hospital policy", AJLM XXIII (1997), 399-48. Papers on privacy concepts are in European Journal of Health Law 4 (June 1997), 119-143. UK insurers oppose a moratorium on use of genetic data, Nature 391 (1998), 3.

There has been a warning from the Canadian Privacy commissioner on the limits to privacy law implementation, Lancet 350 (1997), 1085. On April 22, 1997 the Canadian House of Commons Standing Committee on Human Rights and the Status of Persons with Disabilities presented a report to the House entitled, Privacy: Where Do We Draw the Line? The goal of the report was to provide a way to formulate an ethical and legislative framework for the protection of privacy. The first of 21 recommendations is that the Government of Canada enact a declaration of privacy rights to be called the Canadian Charter of Privacy Rights no later than January 1, 2000. Copies of the report, in English and French, are available from public Works and Government Services Canada - Publishing, Ottawa, ON K1A 0S9. Transcripts of public Committee meetings are available on the Internet at: <http://www.parl.gc.ca>.

The more a doctor stressed confidentiality the more children will divulge information, Ford, CA. et al. "Influence of physician confidentiality assurances on adolescents' willingness to disclose information and seek future health care", JAMA 278 (1997), 1029-34. On open access to data in Europe, Nature 390 (1997), 548. A criticism of proposed US privacy law is Lancet 350 (1997), 823: NEJM 337 (1997), 1466-70. On secrecy in medical practice, BMJ 315 (1997), 1300.

A book review of the US NAS report on Evaluation of Forensic DNA Evidence is in Genet. Res. 70 (1997), 91-3. There is a need to use mathematical theories of statistics in calculating verdicts, NS (13 Dec 1997), 18-9; Science 278 (1997), 1407. DNA testing can be used to refute cancer diagnosis, NEJM 337 (1997), 1245-7. Yves Montand is to be exhumed in France to test paternity, BMJ 315 (1997), 1398. A review of microsatellite mutation is J. Heredity 88 (1997), 335-42. DNA testing of tigers in India is underway, Science 278 (1997), 807.

A summary of the US ELSI Taskforce on genetic testing recommendations, final report, is in GEN 18 (15 Jan 1998), 16, 31, 35. The Association of British Insurers (ABI) has rejected the recommendation of the UK HGAC, to observe a two year moratorium on use of genetic tests, GenEthics News 21 (Jan 1998), 3. The ABI genetics committee has released a new code of practice, and said there are already 8 tests which reliably predict specific risk of disease. Some companies have said they will refrain from testing, e.g. Standard Life. The ABI code will not demand tests but will wish to know the results of tests already undertaken, except for policies under 100,000 pounds tied to a mortgage. The US drug industry is trying to moderate the genetic privacy laws found in various US states, NatMed 4 (1998), 6.

The HUGO Ethics Committee Statement on DNA Sampling, Control and Access is in EJAIB 8 (1998), 56-7; see also comments, in JAMA 279 (1998), 184. The US NBAC is also expected to release guidelines on genetic sample access, Nature 391 (1998), 314. A book review of Lowrance, WW. Privacy and Health Research (USDHHS, 1997, 80pp.) and Clayton, PD. et al. For the Record (National Academy Press, 264pp., ISBN 0-309-05697-7, 1997) is in BMJ 316 (1996), 158-9. Germany has accepted the use of DNA tests as proof of family relationships in Kurdish immigrants from Turkey, who may not have reliable written records, Nature 391 (1998), 723. A commentary on how to estimate the speed at which the mitochondrial clock evolves and mutates is Science 279 (1998), 28-9.

Concerns about commercial access to the French CEPH database follow the access given to a company Chronos to that database, Nature 391 (1998), 727. There have been concerns that the US National Cancer Institute genetic annotation initiative will be biased for Caucasian samples, Nature 391 (1998), 726. Nature is reassessing its policy of allowing publication on papers where not all the data is made open for researchers, Nature 391 (1998), 617. The US DOE has lost a court appeal which found that genetic tests on samples of 7 employees taken before they were employed should not have been conducted without consent, Nature 391 (1998), 626. A discussion of why we need to identify, and whether we do not to do so, is Genetica 101 (1997), 141-4.

The use of PCR has identified there were various strains of Bacillus anthracis in the victims of the 1979 Sverlovsk anthrax outbreak, PNAS 95 (1998), 1224-9. The outbreak is thought to have been the result of a leak from a biowarfare research facility. A conference report on opposition to law officers having open access to medical records is JAMA 279 (1998), 257-9. Although some people object to the presence of traffic speeding cameras, they are shown to reduce traffic accidents and speed, BMJ 316 (1998), 5-6. Video conferencing may discriminate against bald persons, and others who do not want to be seen, NS (24 Jan 1998), 46. There are many new ways to collect criminal evidence, SA (March 1998), 35+.

An analysis of the US genetic privacy act is Troy, ESF. "The Genetic Privacy Act: An analysis of privacy and research concerns", JLME 25 (1997), 256-72. On progress on legislation in the US on gene bias, Human Genome News 9 (1-2), 15; Nature 392 (1998), 641; and on a US taskforce group on privacy, Human Genome News 9 (1-2), 11. On discrimination, Splice of Life 4 (4, 1998), 4-5. The DOE Lawrence Berkeley National Laboratory has been accused of breaching genetic privacy, NS (14 Feb. 1998), 10. Dutch persons who take out life insurance now face disclosure of medical records if they die within a certain time to try to reduce costs from incomplete disclosure, BMJ 316 (1998), 572. A statement of ASHG is "Professional disclosure of familial genetic information", AJHG 62 (1998), 474-83. However paternity testing is expanding in the USA with a hot-line telephone 1-800-DNA-TYPE being advertised, NatMed 4 (1998), 256.

On the confidentiality of health information in criminal law, Health Law Review 6 (1998), 3-11. In New Zealand there are mounting numbers of DNA samples from criminals in a register, about 600 being held in the Southern region; Christchurch Mail (30 March, 1998), 1. Germany is creating a central database for serious criminals, Nature 392 (1998), 749. A discussion of DNA profiling of detained patients is Lancet 351 (1998), 760. The way the numbers are presented can influence jury conclusions, e.g. 1 in a 1000 or 0.1%, NS (28 Feb. 1998), 20. Chance matches in DNA profiles are more likely with mitochondrial DNA tests, NS (28 Feb. 1998), 13.

On privacy, CMAJ 158 (1998), 613-4. On sex, drugs and invasion of privacy, BMJ 316 (1998), 921-4. Privacy and the computer age is discussed in BMJ 316 (1998), 718-9; and France has introduced health cards for medical records, Lancet 351 (1998), 736. On analysis of ancient mummies, NS (28 Feb. 1998), 21.

After 3 years of examining the results of DNA testing, the Russian government has ordered that the remains of Tsar Nicholas II be interred in St. Petersburg, Science 279 (1998), 1639; Nature 392 (1998), 118.

People can pay $US50 for several of their hairs to be placed on a spaceship, scheduled to take off from French Guinea in 2001; Reuter's 16 March 1998. Papers on molecular markers for population biology are in Ecology 79 (1998), 359-60.

A paper that attempts to define genetic tests, and raises questions about whether we can distinguish tests, is Alper, JS. & Beckwith, J. "Distinguishing genetic from nongenetic medical tests: Some implications for anti-discrimination legislation", Science & Engineering Ethics 4 (1998), 141-50; with comments by R.M. Cook-Deegan pp. 151-4. The paper suggests that laws against genetic testing are flawed because a clear distinction is not made. Perhaps the only solution is no discrimination for any medical condition! A summary of the US NIH-DOE ELSI work group taskforce on genetic testing report is Human Genome News 9 (1998, 1-2), 14. A bill on confidentiality S.1921 in the USA may inhibit research, though there is still considered insufficient protection for genetic tests in existing laws. California has laws to prevent employers from using any genetic information - including tests, family histories or conjectures from someone's appearance or ethnicity - in making hiring, promotion or other job-related decisions, Nature 393 (1998), 611.

The German minister of internal affairs, Manfred Kanther, has created a central DNA-analysis database at the German Federal Criminal Police Office (Bundeskriminalamt, BKA) in Wiesbaden "as a weapon against criminals." Although public opinion favors such a database in the fight against crime, there is widespread concern that existing laws do not adequately protect the rights of individuals, NatBio 16 (1998), 510. There are fears that justice will suffer if too much reliance is made on DNA testing, NS (23 May 1998), 18. A description of the Cumbrian genetic registry of 8000 infants for future study and the methods used to protect privacy, is JMG 35 (1998), 413-6.

A report on recent developments in genetics and insurance in the UK are in Euroscreen 9 (Spring 1998), 1-3. On the views of Maoris to genetic information and privacy laws in New Zealand, Euroscreen 9 (Spring 1998), 3-5. Privacy on Internet is discussed in JAMA 279 (1998), 1219+. Concerns about using and interpreting covert video surveillance are in BMJ 316 (1998), 1603-5; and on seeking consent for photos and videos, BMJ 316 (1998), 1009-11. Snooping methods may be against personal privacy if they use infrared searches for marijuana in USA, NS (2 May 1998). Biometric identification (e.g. using eyeball scans) is set to replace passwords and PINs, Science News 153 (1998), 216-7.

A review is Butler, JM. & Levin, BC. "Forensic applications of mitochondrial DNA", TIBTECH 16 (1998), 158-62. On science and law, Science 280 (1998), 537-8. It is difficult to be sure of the results of a genetic test, NS (23 May 1998), 14. Doctors should maintain privacy, BMJ 316 (1998), 1331-2. Lawyers should keep confidentiality also, University of Chicago Law Review 65 (1998), 1-33. Privacy and medical records research is discussed in NEJM 338 (1998), 1076-8. It is possible to access patient records via Internet in some cases, Lancet 351 (1998), 1751, 1811.

The problem of interpretation is discussed in McDonald, R. "Juries and crime labs: Correcting the weak links in the DNA chain", AJLM 24 (1998), 345-64. A policy discussion on privacy of databases is Science 281 (1998), 786-7. The opinion No. 11 of the European Group on Ethics in Science and New Technologies to the EC is on Ethical aspects of human tissue banking dated 21 July 1998.

A discussion of genetic privacy is in an editorial in NatGen 19 (1998), 207-8; and Botkin, JR. et al. "Privacy and confidentiality in the publication of pedigrees. A survey of investigators and biomedical journals", JAMA 279 (1998), 1808-12; Otago Bioethics Report 7 (2, August 1998), 7-11. Genetic links in families are discussed in J. Med. & Phil. 23 (1998), 10-30. On the use of genetic information by insurance companies, Chemistry & Industry (16 Feb. 1998), 148. Book reviews are in NEJM 339 (1998), 135-6. The US Senate is trying to fill holes in the genetic discrimination bills to protect people from health insurance companies, Nature 394 (1998), 306. There is divided opinion in Israel on genetic privacy, Nature 394 (1998), 214.

The use of DNA fingerprinting in conservation is reviewed in NS (15 August 1998), 13.

The FBI's national DNA database was announced on 13 October, 1998,NatBio16 (1998), 987. Though the FBI has operated a state and local DNA database in 41 states and the District of Columbia since 1991, the new National DNA Index System (NDIS) will serve for the first time as a repository for hundreds of thousands of DNA profiles of convicted criminals in all 50 states. NDIS profiles will be accessible by police and law enforcement laboratories across the country, allowing speedy tracking of individuals convicted of felony sex offenses and other violent crimes, as well as of crime-scene evidence such as blood, semen stains, or hair. In the US, state and local FBI databases have already produced more than 400 such matches. To date, the states have collected some 600,000 DNA samples and analyzed, or profiled, more than 250,000. To accommodate strict constitutional guidelines for privacy, confidentiality, and lawful search and seizure, the FBI index can only collect genetic information on convicted criminals, crime scenes, and unidentified human remains.

The UK Human Genetics Advisory Commission has recommended a moratorium on disclosure of genetic test results for life insurance, Wilkie, T. "Genetics and insurance in Britain: Why more that just the Atlantic divides the English-speaking nations", NatGen 20 (1998), 119-21. However the title seems to ignore most English speaking nations the world, only including UK and US! On freedom of information and access to medical information, Lancet 352 (1998), 665, 1216-8; JAMA 280 (1998), 1371-5. The CMA's Health Information Privacy Code is discussed in CMAJ 159 (1998), 953-4. On the US privacy bill, Nature 391 (1998), 826, 835-6; 392 (1998), 6. Design of experiments should help use of patient's data, Lancet 352 (1998), 1375-8.

A series of papers on genetics and the law is in The Modern Law Review 61 (Sept. 1998), 593-65. There is a call for DNA testing in Irish foreign adoption cases, Lancet 352 (1998), 633. A company called The DNA Testing Agency in Kent, UK has announced it offers paternity tests through the post for 300 pounds, GenEthics News 25 (Aug. 1998), 3. Also see, LeBris S, Knoppers BM: International and comparative concepts of privacy. pp. 418-48 in Rothstein M (ed.): Genetic Secrets. New Haven: Yale University Press, 1997. On familial disclosure in defiance of nonconsent, AJHG 63 (1998), 898-900. Lemmens T, Bahamin P. Genetics in Life, Disability and Additional Health Insurance in Canada: A Comparative Ethical and Legal Analysis. pp. 107-275 in: Knoppers BM, ed. Socio-Ethical Issues in Human Genetics (sponsored by the MELSI Committee, Canadian Genome Analysis and Technology Program (CGAT)). Cowansville: Yvon Blais, 1998.

A probe is being used to catch a rhino poacher NatBio16 (1998), 991.

Privacy is discussed in Rothstein, MA. "Protecting genetic privacy by permitting employer access only to job-related employee medical information: Analysis of a unique Minnesota Law", AJLM 24 (1998), 399-416. An analysis of the law on protection against genetic discrimination proposed by the 105th US Congress is AJLM 24 (1998), 443-80; and in general, Beckwith, J. & Aper, JS. "Reconsidering genetic antidiscrimination legislation", J. Law, Medicine & Ethics 26 (1998), 205-10.

A paper discussing use of genetic information in Bangladesh is Begum, H. "Relevance of genetic information in a developing country", IAB News 8 (Autumn 1998), 2-5. The UK is establishing a validation test for insurers who will use genetic tests, Lancet 352 (1998), 1608, 1647-8, 1941; Science 282 (1998), 1237. A study has found life insurers are non consistent across the UK, Low, L. et al. "Genetic discrimination in life insurance: empirical evidence from a cross sectional survey of genetic support groups in the United Kingdom", BMJ 317 (1998), 1632-5; Morrison, PJ. "Genetic testing and insurance in the United Kingdom", Clinical Genetics 54 (1998), 375-9.

The need to protect persons is highlighted in Greely, HT. "Genomics research and human subjects", Science 282 (1998), 625. The US Bioethics Advisory Commission has also issued a report arguing for tighter controls on tissue and DNA sample banks, Science 282 (1998), 2165-6. The question of DNA banks is discussed in King, D. "DNA banks and the future of medical research", GenEthics News 26 (Oct/Nov 1998), 6-8. Permission should be sought for publishing family pedigrees and preserving privacy, JAMA 280 (1998), 1826-7. There are many challenges of computerization, Lancet 352 (1998), 1617-22. Patient privacy is discussed in JAMA 280 (1998), 1897. Privacy concerns in Canada are discussed in CMAJ 159 (1998), 1378-80.

The Spanish home office has agreed to a new DNA databank to trace unidentified corpses that are buried in cemeteries, Lancet 352 (1998), 1763. Letters on the Thomas Jefferson paternity case are Nature 397 (1999), 32; he is not the only white American with mixed descendants, NS (21 Nov. 1998), 60. On use of DNA analysis to trace out ancient human behaviour and diet, NS (12 Dec. 1998), 34-7. DNA fingerprinting may also trace out nonpoint sources of pollution, EST 32 (1998), 486-7A.

A survey of 3000 persons with a family genetic disease has found one third have experienced problems with insurance in the UK, GenEthics News 27 (Jan. 1999), 3. Another survey found a similar ratio, based on interviews with medical specialists, Health Law Review 7 (No. 3, Winter 1999), 7-8. Employment discrimination is also observed, GeneWatch 11 (Jan 1999), 5-7; JLME 26 (1998), 189-97. There still need to be better antidiscrimination laws, JLME 26 (1998), 198-210. On cancer genetics and insurance, AJHG 64 (1999), 328-9.

In general on confidentiality, BME 146 (March 1999), 18-21; MJA 170 (1999), 181-4; Nature 398 (1999), 451; NEJM 340 (1999), 820-1; Glancy, GD., et al. "Confidentiality in Crisis: Part ? The Duty to Inform", Can J Psychiatry 43 (1998), 1001-1017. If a doctor is in court, and there is no public interest, medical confidentiality should be preserved, MJA 170 (1999), 222-4. On the use of DNA in forensic databases, Science & Justice 39 (1999), 1; in New York City, NatGen 21 (1999), 243-4; and in China, Nature 397 (1999), 380.

The use of DNA testing on a 9000 year old corpse from North America is now permitted after regulatory delays, Nature 397 (1999), 551. Thomas Jefferson has been linked by DNA testing to a slave's child, Science News 154 (1998), 379; Science 283 (1999), 153-4. DNA testing is also being used to check the influence of pollution, Science News 154 (1998), 344. PCR is being used for detecting Yersinia ruckeri in trout, AEM 65 (1999), 346-50; dangerous bacteria in food, NS (27 Feb. 1999), 23; and for developing ways to conserve Galapagos tortoises, SA (March 1999), 21, 24. Genetic tracking of a protected whale is reported in Nature 397 (1999), 307-8.

Papers on privacy in general include Etzioni, A. "Medical records: Enhancing privacy, preserving the common good", HCR 29 (March 1999), 14-23; BMJ 318 (1999), 1328-31. On Internet privacy, NS (8 May 1999), 3, 7.

There continues to be much discussion of the Icelandic genetic database, Gulcher, J. & Stefansson, K. "An Icelandic saga on a centralized healthcare database and democratic decision making", NatBio 17 (1999), 620; Chadwick, R. "The Icelandic database - do modern times need modern sagas? ", BMJ 319 (1999), 441-4; BMJ 318 (1999), 1565; Nature 400 (1999), 307-8. Sweden has set standards for use of genetic biobanks, Nature 400 (1999), 3. Also on the general topic, Fuller, BP. et al. "Privacy in genetics research", Science 285 (1999), 1359-61; Boetzkes, E. "Genetic knowledge and third-party interests", CQHE 8 (1999), 386-92. The future of insurance in the genetics age is questioned in Splice 5 (July/August 1999), 4-5, 13; BMJ 319 (1999), 271. A series of 10 papers on electronic medical information: Privacy, liability and quality issues, is in AJLM 25 (No. 2&3, 1999), 191-422. On ethics, Sommerville, A. "Genetic privacy: Orthodoxy or oxymoron?", JME 25 (1999), 144-50. The UK Human Genetics Advisory Commission has recommended that genetic tests could be useful in employment when the safety of the public is at stake, and possibly when some work environment places them at risk if it cannot be changed, NS (24 July 1999), 24. Germany has called for limits on the use of gene data by insurance companies.Access to medical records is discussed in MJA 170 (1999), 343-4; BMJ 319 (1999), 372-5. Doctors who sell prescription data to companies are breaching confidentiality, BMJ 318 (1999), 1505. Questions on whether to allow access to deceased presidential DNA are raised in NatMed 5 (1998), 859.DNA forensics is also being applied to counter illegal poaching of animals, NatBio 17 (1999), 649-51. DNA fingerprinting can proof innocence of alleged criminals, Time (13 Sept. 1999), 30-2.

A new book is Long, Clarisa, ed., Genetic Testing and the Use of Information (Washington DC. The AEI Press 1999, 144pp.), which includes 6 papers on the issues. A review of the 39 US states that have some legislative protection against genetic discrimination is in GeneWatch 12 (Oct. 1999), 13. On health insurance and gene testing, Lancet 354 (1999), 1650; Nature Medicine 5 (1999), 974. In Sweden tissue banks are being protected to ensure privacy is maintained, Science 285 (1999), 894. A book review of Weir, RF., ed, Stored Tissue Samples: Ethical, Legal, and Public Policy Implications (Univ. Iowa, 1996), is JAMA 282 (1999), 1093.

Background on the Canadian Bill C-54 on privacy protection is Health Law Review 8 (1999), 13-21. The UK MRC working party draft guidelines on personal information in medical research are discussed in BME 151 (1999), 9-11. New BMA guidelines on confidentiality have been called unlawful by the NHS, BMJ 319 (1999), 1221. The UK Freedom of Information Bill should allow public information on major public safety issues, NS (13 Nov. 1999), 20-1. On 29 October President Clinton proposed nationwide rules to protect the confidentiality of medical records, Lancet 354 (1999), 1711. There are some comments on database protection in Nature Genetics 23 (1999), 1-2. There are some who think that there has been too much fear over misuse of medical data, BMJ 319 (1999), 706-7. On computer storage, Hodge, JG. et al. "Legal issues concerning electronic health information. Privacy, Quality, and Liability", JAMA 282 (1999), 1466-71. A review of software development for confidential Email is NS (6 Nov. 1999), 48-51. The rate of failure of polygraph screening suggests the system is not so reliable, SA (Oct. 1999), 21, 24.

Israeli police have been accused of illegally taking DNA samples from suspected sex offenders in a search for a rapist, Nature 401 (1999), 628. The physical separation methods for separating sperm and vaginal cells after sexual assault are discussed in O&G 94 (1999), 623-7. Y chromosome specific polymorphism for forensic analysis is reported in Legal Medicine (Japan) 1 (1999), 55-60. Ice damage means there is little chance of reviving a mammoth from the DNA, NS (13 Nov. 1999), 11. DNA analysis of Atlantic herring is reported in Heredity 83 (1999), 490-9. A rapid DNA test can identify human viruses in beach water, EST 33 (1999), 399A. A locker room that uses fingerprints as the keys is being installed in Belfast, NS (13 Nov. 1999), 23. There are claims that DNA testing is stopping Hamas suicide bombings, because families can be traced.

A press dossier on the opinion on Ethical Issues of Healthcare in the Information Society by the European Group on Ethics in Science and New Technologies to the European Commission, has been released in 30 July. 1999 (78pp.). A comparison of history suggests Europeans and Americans differ on how to protect sensitive personal information, Newsweek (Special Millennium issue 1999), 82-3. A US legal paper is O'Neil, RM. "Privacy and press freedom: Paparazzi and other intruders", Univ. Illinois (1999), 703-16. The question of whether doctors should ever lie on behalf of their patients is asked in JAMA 282 (1999), 1674. Also on privacy, JAMA 282 (1999), 1676-7, 9; BMJ 319 (1999), 1366; MJA 171 (1999), 544-6; Rowell M, et al. "The Good Pediatrician: Should You Keep a Secret? Confidentiality and Truthfulness", Annals RCPSC 32 (Fall Supplement 1999), 102-7. Researchers have voiced objections to a proposal that the US Congress considered on privacy, Science 286 (1999), 1658.

The method of DNA fingerprinting and identity is discussed in Science & Justice 39 (1999), 213-22, 257-60. In Spain real fingerprints will be taken from all babies at birth to avoid mixing, Lancet 355 (2000), 296. Laws on genetic information protection are discussed in JAMA 282 (1999), 2197-8; Hall, MA. & Rich, S. "Laws restricting health insurers' use of genetic information: Impact on genetic discrimination", AJHG 66 (2000), 297-307. A comment that self-interest will prevent insurance companies making people genetic outlaws is NS (12 Feb. 2000), 48-9. DNA tests is being used to thwart the tiger trade, Science 287 (2000), 963.

Confidentiality of medical records is discussed in JAMA 283 (2000), 795-7; MJA 172 (2000), 28-30. A UK court has sanctioned the us of anonymized patient data in research, BMJ 320 (2000), 77. A survey in the US has reported the location of 300+ million human tissue samples in the USA, Rand Corporation, Handbook of Human Tissue Resources, Nature 403 (2000), 352. The Science and Technology Council of Japan has created an ad hoc group to look at ethical and social issues of research using human DNA samples, Nature 403 (2000), 11.

A review is Primorac, D. et al. "Application of forensic DNA testing in the legal system", Croatian Medical Journal 41 (2000), 32-46. A recent book is Long, Clarisa, Genetic Testing and the Use of Information, The AEI Press 1999, 6 chapters, 144pp. A hate mail author has been identified by DNA analysis, NatMed. 6 (2000), 364.

;President Clinton has outlawed genetic discrimination in federal jobs, BMJ 320 (2000), 468. The Japanese Ministry of Health and Welfare has released a set of guidelines covering the transplantation and medical use of human cells and tissues, Nature 403 (2000), 819-20; 404 (2000), 529. Informed consent is required. The restrictions of US guidelines on research requiring specific consent with stored human cells and tissues have led to protests by some scientists, J. Molecular Diagnostics 2 (2000), 1-4; Nature 404 (2000), 114-5, 30. The protection of gene samples from population genetics is discussed in AJHG 66 (2000), 745-7. The US NIH and FDA have set up a database for new clinical trials, BMJ 320 (2000), 668.

;A paper exploring how autonomy may dominate future use of genetics is Moore, AD. "Owning genetic information and gene enhancement techniques: Why privacy and property rights may undermine social control of the human genome", Bioethics 14 (2000), 97-119. Bioinformatics and gene profiling is discussed in Science 287 (2000), 1221-2; NS (11 March 2000), 4. In general on privacy, SA (April 2000), 44-5; JAMA 283 (2000), 1564-5.

Two papers on the Icelandic health care databases and genetic registyr are in NEJM 342 (2000), 1827-33. The management of genetic information is discussed in Law & Human Genome Review 11 (1999), 167-86. The use of genetic information by insurance companies is discussed in Lancet 355 (2000), 1526. The WMA has drafted guidelines on genetic databases, Lancet 355 (2000), 1704. The potential misuse of DNA data about criminality in court is reviewed in NEJM 342 (2000), 1762-3. On the question who should know our genetic makeup, JME 26 (2000), 1717-4.

A new paper is Launis, V. "The use of genetic test information in insurance: The argument from indistinguishability reconsidered", Science & Eng. Ethics 6 (2000), 299-310, 311-5. Insurance problems are reported in the USA in Zick, CD. Et al. "Genetic testing, adverse selection, and the demand for life insurance", AJMG 93 (2000), 29-39. A report from Iceland and genetic privacy, NS (July 2000), 42-5.

A US case has led the release of DNA primers used in a kit for forensic purposes, Nature 406 (2000), 336. On DNA profiling, Australasian Science (July 2000), 17-23. On national security and scientific communication, PNAS 97 (2000), 5034-6. The UK's Internet spy system has been accused of being obsolete, NS (29 July 2000), 4-5.

The UK will allow genetic testing for Huntingtonfs disease by insurance companies, NatBio 18 (2000), 1127; Nature 407 (2000), 826; BMJ 321 (2000), 977; NS (21 Oct. 2000), 3, 7. The results of the Genetics and Insurance Committee consideration for 6 other tests will also be considered and given by June 2001. Genetic privacy is still an ideal people many pursue, NatGen 26 (2000), 1-2.

A review paper is Weijer, C. & Emanuel, EJ. gProtecting communities in biomedical researchh, Science 289 (2000), 1142-4. Collecting of genes for research is discussed in BMJ 321 (2000), 854. There is controversy over the collecting of data in Iceland, Nature 406 (2000), 819. Estonia is preparing for a national DNA database, Science 290 (2000), 31. Singapore is to create a nationwide disease database, Nature 407 (2000), 935. A review of new tools for police investigation is Science 289 (2000), 850-4.

Data protection legislation is discussed in BMJ 321 (2000), 890-2. Breach of confidence as a privacy remedy in the Human Rights Act in the UK is reviewed in Modern Law Review (2000), 660+. There may be some research which needs patient-identifiable data, BMJ 321 (2000), 1031-2. A letter over the publishing of a woman patientfs photo without her direct consent in Lancet is discussed in Lancet 356 (2000), 1036. The question of licensing of our personal information may be a solution to Internet privacy, California Law Review 88 (2000), 1507-46. A case study on the use of Internet to access confidential patient records is reported in BMJ 321 (2000), 612-4. A survey of genetic registers in clinical practice in the UK is JMG 37 (2000), 636-40. Hackers have broken into Irish counseling helpline services, Lancet 356 (2000), 745.

UK insurers are allowed to use Huntington disease gene tests, BMJ 321 (2000), 977; NatGen 26 (2000), 251-2. On patient confidentiality and the surrogates’ right to know, JLME 28 (2000), 137-43. A review of genetic discrimination in the USA and laws on genetics, GMO labeling, is GeneWatch 13 (Winter 2000), 7-10; SA (Jan. 2001), 13-4. A book review of Genetics and Public Health in the 21st Century is NEJM 343 (2000), 1580. The question of when confidentiality clashes with the duty to warn relatives is discussed in BMJ 321 (2000), 1464-6.

The question of who has a right to access medical information is discussed in J. Law & Med. 8 (2000), 81-8. Canadians have been given more access to their own medical records, Lancet 356 (2000), 2168. The future of medical records are discussed in JAMA 284 (2000), 2652; BMJ 321 (2000), 1199-203. The question of health-based surveillance is discussed in Science 290 (2000), 1898-9. Informed consent is neded for tissue retention in Australia, Lancet 356 (2000), 1663. On patient identiable data, BMJ 321 (2000), 1031-2.; A method has been developed to spray envelopes so that the contents are visible to examination, NS< (16 Dec. 2000), 23. The use of genetics to identify missing persons is discussed in Science 290 (2000), 2257-8.

Preemployment medical tests are discussed in Behm, AR. "The Americans with (or without) Disabilities Act: Pre-employment medical inquiries and the non-disabled", AJLM 26 (2000), 439-52; SA (Jan. 2001), 13-4. The UK case is discussed in The Independent (6 Feb. 2001). On genetic privacy laws, JLME 28 (2001), 245-57. A discussion of the ethics of DNA databanking from criminals in the USA is JLME 28 (2001), 209-23.

Also on medical privacy, Botkin, JR. "Protecting the privacy of family members in survey and pedigree research", JAMA 285 (2001), 207-11; also BMJ 322 (2001), 8; AJLM 26 (2000), 453-74. The question of how to keep patient privacy with electronic records is discussed in BMJ 322 (2001), 283-7. The UK Health and Social Care Bill will allow some breaches of patient privacy, BMJ 322 (2001), 256. In general, a book review of Crypto is NS (13 Jan. 2001), 51. A US company is planning to bank human DNA profiles for patients, Science 291 (2001), 575.

An interesting discussion document from the UK is Human Genetics Commission, Whose hands on your genes? A discussion document on the storage protection and use of personal genetic information (HGC, Nov. 2000), and the consultation period has just finished. See also the web site, www.hgc.gov.uk. There has been criticism of the UK government decision to go ahead with a larger DNA database including suspects, not just convicted persons, Splice 7 (Jan 2001), 8-9. The House of Lords supports it, BMJ 322 (2001), 755. A general review paper is von Tigerstrom, B. et al. "Legal regulation of cancer surveillance: Canadian and International Perspectives", Health Law J. 8 (2000), 1-94. A discussion of the Alberta Health Information Act is Health Law Review 9 (2000), 3-21.

Reviews on forensics are Relly, P. "Legal and public policy issues in DNA forensics", Nature Reviews, Genetics 2 (20001), 313-7; Guillen, M. et al. "Ethical-legal problems of DNA databases in criminal investigation", J. Med. Ethics 26 (2000), 266-71. A description of a UK database with 30 million patient years of data that has Internet access is Lancet 357 (2001), 649; BMJ 322 (2001), 731. Use of patient identifiable data without consent is debated in BMJ 322 (2001), 442-3, 858-9.

A UK parliamentary committee has called for a 2 year moratorium on the use of genetic testing by insurance companies, Nature 410 (2001), 733; Independent (4 April 2001). Germany plans to ban genetic tests by insurance companies, Lancet 357 (2001), 943. In general on genetic discrimination in insurance, Monash Bioethics Review 20 (2001), 24-32. A US railway company, Northern Santa Fe has agreed to stop genetic testing for a wrist condition, carpal tunnel syndrome, BMJ 322 (2001), 449. Ethical issues are discussed in Lucassen, A. & Parker, M. "Revealing false paternity: some ethical considerations", Lancet 357 (2001), 1033-5. Paternity testing is unsettling law of paternity and child support, Int. Herald Tribune (12 March 2001), 1, 4.

In general on use of genetic information, Science 291 (2001), 1249-51; Nature 410 (2001), 851. On databases, Chadwick, R. & Berg, K. "Solidarity and equity: New ethical frameworks for genetic databases", Nature Reviews, Genetics 2 (20001), 318-21. AstraZeneca has signed a deal with Shanghai Jiao Tong University for access to its DNA database, for use in research on schizophrenia, Nature 410 (2001), 858. A letter on safeguards for research on DNA databases is BMJ 322 (2001), 551.

A book review on Privacy an Confidentiality in Mental Health Care is BMJ 322 (2001), 560. The FDA is going to regulate tissue banks in the USA, NatMed 7 (2001), 264-5.

A review paper is Nunes, R. & Pereira de Melo, H. "Genetic testing in the workplace. Medical, ethical and legal issues", Human Genome Review 13 (July 2000), 119-42. President Bush announced plans to combat genetic discrimination on 23 June, Nature 411 (2001), 985; NS (30 June 2001), 5. There are two bills being discussed in the US government now. The UK Human Genetics Commission recommends a three year ban on insurers using genetic tests, BMJ 322 (2001), 1060-1, 1144; Current Biology 11 (2001), R375-6. In Japan the government has announced it will stop screening applicants for colour blindness prior to hiring, Asahi Shimbun / IHT (English version) (23 June 2001), 22.

The FDA has introduced regulations requiring that all human tissue banks register with the FDA, and has proposed rules for good tissue practice, NatMed. 7 (2001), 264-5. Plans for a wide ranging UK genetics database are discussed in BMJ 322 (2001), 1009-10, 1018. Human genetic databases are discussed in BMJ 322 (2001), 1009-10. Stored tissue may be important for future care of families, BMJ 322 (2001), 1060. UK registries will have to apply for the right to collect patient's data without consent, BMJ 322 (2001), 1199; Nature 411 (2001), 509.

Confidentiality of patient records is discussed in JAMA 285 (2001), 3075-6; MJA 174 (2001), 296-7, 637-40. US health insurance privacy is discussed in JAMA 285 (2001), 3015-21. Privacy is also important for family members, JAMA 285 (2001), 1960-3. Papers on privacy are in Social Research 68 (Spring 2001), 1-350+. On use of electronic patient's records, BMJ 322 (2001), 1401-5.

A DNA test was used to convict a restaurant owner of selling illegally caught salmon, Nature 411 (2001), 407. A series of papers on DNA profiling of animal mating systems is J. Heredity (March 2001), 99-200.

A series of papers on DNA analysis in forensic science is in Croatian Medical J. 42 (No. 3, 2001), 217-345. It includes debates on the use of DNA evidence in courts, and applications of DNA analysis to a range of forensic uses. A report from the forensic DNA database in New Zealand is Australasian Science (July 2001), 34-6.

A paper discussing the Icelandic genome database is TIBTECH 19 (2001), 166-71. A discussion of whether privacy concerns in UK law hamper research is in NatGen 28 (2001), 195-6. On ethical issues in testing, Robertson, JA. "Consent and privacy in pharmacogenetictesting", NatGen 28 (2001), 207-9. A US based paper is Annas, GJ. "The limits of State laws to protect genetic information", NEJM 345 (2001), 385-8. Eli Lily has admitted that it violated its own policy on protecting privacy by publishing Email addresses of over 700 patients taking Provac, BMJ 323 (2001), 65. In general on privacy, NEJM 345 (2001), 371-2. Not revealing paternity after genetic testing is supported in Lancet 358 (2001), 241.

DNA signatures may allow following animals to avoid disease risks, like BSE, NS (7 July 2001), 19.

Reports on genetic discrimination is include, Wong, JC. & Lieh-Mak, F. "Genetic discrimination and mental illness: a case report", JME 27 (2001), 393-7; GeneWatch 15 (Jan. 2002), 3-4. A book review of Wailoo, K., Dying in the City of the Blues: Sickle Cell Anemia and the Politics of Race and Health is Nature 415 (2002), 477-8. The use of the physician as a gate keeper for the criminal justice system regarding use of genetic information is discussed in JLME 30 (2002), 88-94. Old fashioned fingerprinting may not hold up to Supreme Court evidence standards in the USA, Science 295 (2002), 418. However a Y chromosome can be a marker for rape, NS (2 March 2002), 12.

New US privacy rules in the 32 page Privacy Rule from the US DHHS may hinder research, Science 294 (2001), 2070-1. The question of privacy is discussed in general in SA (March 2002), 10-1. Opposition to the proposed Tongan genetic database from church and prodemocracy groups has raised questions on its future, BMJ 324 (2002), 443. The relation between autonomy and responsibility in the use of genetics is discussed in Knoppers, BM. "Genetic information and the family: are we our brother's keeper?", TIBTECH 20 (2002), 85-6.

A paper reporting 48 cases of alleged discrimination is Stewrat, K. & Keays, D. "Genetic discrimination in Australia", J. Law & Med. 8 (2001), 250-62. UK insurers have agreed to a five year ban on using genetic tests for life insurance policies under 500 thousand pounds, BMJ 323 (2001), 1021; Nature 414 (2001), 6.

French patients have been given legal rights to their medical records, BMJ 323 (2001), 826. A survey of the use of electronic medical records in hospitals in Norway is BMJ 323 (2001), 1344-8; and in general, BMJ 323 (2001), 1184-5; NEJM 345 (2001), 1576-7. Privacy of health care workers is discussed in Lancet 358 (2001), 1919. A dispute over access to the gdb.org domain name and the genetic database is discussed in NS (24 Nov. 2001), 10. The balance between privacy and public security afer terrorism is discussed in Nature 413 (2001), 773.

Molecular testing for infectious diseases is reviewed in Science 294 (2001), 1553-5. Methods for criminal detection in forensics are discussed in NS (27 Oct. 2001), 52-3. The potential for pharmacogenomics to reduce adverse drug reactions is discussed in JAMA 286 (2001), 2270-9; Lancet 358 (2001), 1559; NatGen 29 (2001), 247-8.

A US freight railway company has agreed to stop requiring genetic testing of employees who file claims for carpal wrist syndrome, BMJ 322 (2001), 449. In general on US privacy protection, AJPH 91 (2001), 1388-92. A Canadian court case, R. v. Kin Yung Ku (B.C. Supreme Court, July 2001) saw a British Columbia Supreme Court judge reject arguments that the federal DNA criminal databank law violates an accused's rights under the Canadian Charter of Rights and Freedoms, Canadian Bioethics Report (August 2001).

In general on privacy, CMAJ 165 (2001), 307-9; NEJM 345 (2001), 844; Lancet 358 (2001), 597. In Germany there has been controversy over a proposed electronic patient card, Lancet 358 (2001), 822. A report from Canada on the adoption of smart cards is SSM 53 (2001), 879-94. There have been concerns about privacy violations in the face of the war on terrorism, NS (22 Sept. 2001), 12-3; (29 Sept. 2001), 3. On Email privacy, NS (15 Sept. 2001), 19. Y-chromosome analysis has been suggested for sex crimes, Nature 413 (2001), 6. The use of DNA analysis in Bosnia is reviewed in Science 293 (2001), 1422-3.

In Japan there was controversy over the sale of human cell lines by Tokyo District Court on 26 October, 2001, as loan indemnity following their seizure, see Patents and Business section (and Eubios Daily News). It violates the guidelines of the Education and Science Ministry on consent requirements for human cell lines. On the ethics of using cancer cell line banks, MJA 175 (2001), 293-4.


A series of 3 articles on genetic databases in Iceland and privacy are in New Genetics and Society 20 (2001), 101-156. On the risks and oversight of genetic databases in the UK, New Genetics and Society 20 (2001), 157-84; and in general on DNA sampling, New Genetics and Society 20 (2001), 59-68; 19 (2000), 165-206. The genetic data of half a million UK persons will go to a new UK biobank, Nature 417 (2002), 9. A paper on ethical issues is Harris, J., "Ethical issues in genetic testing for insurance", Law and the Human Genome Review 15 (2001), 25-31. The issues of genetics and insurance in the UK are discussed in BME 176 (March 2002), 19-24; BMJ 324 (2002), 443.

A book review on regulation of data and privacy is BMJ 324 (2002), 619. A summary of the Danish Council of Ethics report on genetic investigation of healthy subjects is BME 175 (Feb. 2002), 8-11 (www.etiskraad.dk). An online tumour bank combining resources of 8 physical centers in Europe is reported in Nature 416 (2002), 464. Gene expression profiling to classify soft tissue sarcomas is reported in Lancet 359 (2002), 1263-4. Privacy is discussed in Lancet 359 (2002), 84; NEJM 346 (2002), 201-4.

The human genome issue may force a transformation of the US private insurance based health care system, Geetter, JS. "Coding for change: The power of the human genome to transform the American health insurance system", AJLM 28 (2002), 1-76. A report by the California HealthCare Foundation (6 May) claims the US lacks a policy of protecting genetic information, Lancet 359 (2002), 1678. Genetic discrimination is discussed in Human Genome News 12 (Feb. 2002), 9-11. A report from a conference that discussed the Autogen agreement with Tonga for a genetic database is BME 175 (Feb. 2002), 4; BMJ 324 (2002), 443.

A US federal judge changed his decision from use of fingerprint data, Science 296 (2002), 2195-7. DNA and immigration are discussed in Lancet 359 (2002), 794.

The UK gene bank Biobank has received 45 million pounds form the MRC, SCRIP 2744/5 (8-10 May 2002), 6. The son of a baseball hero Ted Williams wants to extract DNA from his father's corpse, The Independent (14 July 2002), 20. In the UK deceitfully obtaining someone elses' DNA will become a criminal offense in the UK, Nature 417 (2002), 370-1.

A call for an independent review of Biobank, UK is made in Lancet 359 (2002), 2282. Confidentiality in the UK is discussed in BME 178 (May 2002), 4-5. The text of the UK Statutory Instrument 2002 No. 1438 has abolished the long tradition that absolute confidentiality should be protected between patients and doctors, and t is reproduced in BME 178 (May 2002), 8-11. The use of DNA testing to identify family members is discussed in AJLM 28 (2002), 215-33. Use of DNA to predict what a person is like is becoming more reliable, NS (20 July, 2002), 34-7. Genetic testing by employers is discussed in AJLM 28 (2002), 271-84, and in general on privacy, pp. 285-324.

The US has revised privacy rules that will aid research, NatMed. 8 (2002), 543; Science 297 (2002), 1108-9; NEJM 346 (2002), 1674; Lancet 359 (2002), 1585; JAMA 288 (2002), 815-9. US research on stored samples is discussed in Bioethics 16 (2002), 33-54. NIH Points to Consider on research on named populations is on-line, AJHG 70 (2002), 1602; http://www.nih.gov/sigs/bioethics/named_populations.html

The universal use of neonatal DNA screening for forensic purposes is debated in Nature 418 (2002), 585-6; 419 (2002), 247-8. The report of the UK Human Genetics Commission, Inside Information. Balancing interests in the use of personal genetic data (May 2002, 182pp.) can be ordered by Email: doh@prolog.uk.com. The use of genetic data for criminal cases is discussed in Nature 419 (2002), 247, 422; 420 (2002), 359.

There are an increasing number of population genetics databases being made, Science 298 (2002), 1158-61; NatGen (Sept. 2002; supplement), 3. A report from the International Endogene study which is a collection of families for genetic research in endometriosis is F&S 78 (2002), 679-85. There are continued debates over research access to genetic databases, Science 298 (2002), 1312-3. Ethical issues in placental blood collection and storage are discussed in Lancet 360 (2002), 1335-6. A paper looking at informed consent for use of blood stored for more than a decade is BMJ 325 (2002), 634-5. The human transcriptome database is discussed in Nature 419 (2002), 3. The dangers of misuse of information in databases is discussed in NS (21 Sept. 2002), 5. The USA does not have a federal policy for protecting privacy of genetic information, Lancet 359 (2002), 1678.

There are ethical concerns over the strict policing of Internet in China, NS (9 Nov. 2002), 27. This could happen everywhere, Nature 418 (2002), 580-2. Electronic tagging of persons with dementia who wander may protect them, BMJ 325 (2002), 847-8.

Bioethics of forensic medicine is discussed in JLME 30 (2002), 420-39. Privacy of DNA is discussed in Lancet 360 (2002), 1850. Privacy in the information age is discussed in BMJ 325 (2002), 1309. Use of audiotapes in genetic counseling is discussed in JMG 39 (2002), 697-703.

The British insurers and BMA joint statement on medical information and insurance is in BME 184 (Jan. 2003), 7-11; www.bma.org.uk and www.abi.org.uk. A study on privacy laws on insurer behaviour is Genetic Testing 4 (2000), 31-42. There is a lack of data on genetic discrimination, European J. Human Genetics 11 (2003), 1-2; Nature 421 (2003), 313.

The use of DNA fingerprinting to show convicted criminals may be innocent is discussed in GeneWatch 16 (Jan. 2003), 10-1. Use of DNA in forensic evidence in Australasia is in GeneWatch 16 (Jan. 2003), 12-3. In general, NatGen 33 (2003), 109-10. A study has found more than half the published genetic databases of mitochondrial DNA have mistakes, Nature 421 (2003), 773-4.

UNESCO is calling for comments on the Draft Revised Outline of the International Declaration on Human Genetic Data, at their web site. Genetic privacy is discussed in SSM 56 (2003), 53-65; Medicine, Health Care and Philosophy 1 (1998), 225-33. Genetics studies in Iceland suggest similar diversity to the rest of Europe, Nature 421 (2003), 678. On tracing genetic identity, BMJ 325 (2002), 1469-71.

Use of DNA tests for microbial disease monitoring is discussed in Science 299 (2003), 1164-5.

The preservation of patient privacy in medical record access is discussed in Lancet 361 (2003), 1140; BMJ 326 (2003), 725-6; NEJM 348 (2003), 1505-6; NatBio 20 (2002), 332; New Zealand Family Practitioner 30 (2003), 10-20. The limits of consent and confidentiality are discussed in JME 29 (2003), 2-18. The US HIPAA regulations are discussed in NEJM 348 (2003), 1486-90.

The UNESCO IBC report on "Human Genetic Data: Preliminary Study by the IBC on its Collection, Processing, Storage and Use is pp. 21-50 in the Proceedings of the Eighth Session of the IBC (UNESCO, 2003). The Draft International Declaration on Human Genetic Data is on-line and set for adoption at the November 2003 General Conference of UNESCO. The use of biological samples is considered in Law and the Human Genome Review 17 (July 2002), 15-22. Genetic databanks are discussed in NatGen 33 (2003), 325-6. On UK biobank, NatBio 20 (2002), 529; Lancet 361 (2003), 1193. There is controversy over the lack of attention paid to ELSI issues in the Japanese biobank project which will sample 300,000 persons. On details of the project, APBN 7 (2003), 53.

The case against using racial profiles in crime is in Columbia Law Review 103 (2003), 662-86. On forensic DNA testing for everyone, Nature 418 (2002), 585-6; 422 (2003), 13-4. Forensics in Brazil is reemerging, Nature 423 (2003), 13-4.

Use of DNA testing in ecology and community genetics is discussed in papers in Ecology 84 (2003), 543-601. Every species can be identified, NS (22 March 2003), 14.

Discussion of the UK national DNA database for criminals is Lancet 361 (2003), 1841-2. UK biobank is discussed in Lancet 361 (2003), 1734-8; NS (10 May 2003), 25. There will also be a tumour bank to match biobank, NatMed. 9 (2003), 491. An African American biobank has been proposed, Science 300 (2003), 1485. The genetic heterozygosity of Icelanders is summarized in Annals of Human Genetics 67 (2003), 5-16. The use of race and ethnicity in publication is reviewed in JAMA 289 (2003), 2709-16. Geocoding public health data is discussed in AJPH 93 (2003), 699-701.

A comment on the UK Human Genetics Commission report on genes direct is in BME 187 (2003), 3-5. Leprosy discrimination is reviewed in Sato, H. & Narita, M. "Politics of leprosy segregation in Japan: The emergence, transformation and abolition of the patient segregation policy", SSM 57 (2003), 2529-39. Stigma is discussed in SSM 57 (2003), 2191-200; MJA 178 (2003), S47-8. On identification of bodies in a mass grave, BMJ 326 (2003), 1110; and including the World Trade center human identification project, Croatian Med. J. 44 (2003), 251-341.

The sharing of patient information between professionals is discussed in MJA 178 (2003), 277-9. Beyond the legal duties of privacy is often needed, MJA 178 (2003), 252-3. Disclosure of genetic information inside families is discussed in papers in AJMG 119C (2003), 51-9. Disclosure of genetic information to adopted children is discussed in AJMG 119C (2003), 41-6. The US may pass a genetic privacy protection bill, Nature 423 (2003), 472. Genetic discrimination is discussed in AJLM 29 (2003), 77-116. Quebec has published an opinion statement "The ethical issues of genetic databases: Towards democratic and responsible regulation", .

US database protection laws are debated in Science & Engineering Ethics 9 (2003), 301-18. The increased use of electronic technology in medicine is discussed in JAMA 290 (2003), 259-64; BMJ 326 (2003), 1439-43; 327 (2003), 114-5; Lancet 362 (2003), 452-3. Forensic exhumation of mass graves in Iraq is described in JAMA 290 (2003), 663-6. Possible codes for encrypting data in DNA are given in Biotechnology Letters 25 (2003), 1125-30. DNA codes can be used to link marijuana to the source, NS (12 July 2003), 7.

A Japanese genetics and health study has been halted by concerns expressed by the Japan Medical Association over privacy, Science 301 (2003), 1039; Nature 424 (2003), 359. There is also a Japanese biobank project, NatMed. 9 (2003), 982. On the future of the UK Biobank, Lancet 362 (2003), 492. Discussion of the UNESCO guidelines on protection of genetic data is Lancet 362 (2003), 45. A DNA biobank for African Americans has started, NatMed. 9 (2003), 809.

A US study found no actual evidence of discrimination, Armstrong K. et al. "Life insurance and breats cancer risk assessement", AJMG 120A (2003), 359-64. The US is considering still about genetic discrimination, NatMed. 9 (2003), 983.

The collapse of Swedish company UmanGenomics that has a tissue bank with samples from 87,000 persons raises ethical dilemmas on what to do with the data, Nature 425 (2003), 123-4. Charities may be another way to organize biobanks, NEJM 349 (2003), 1180-4. The UK Biobank has draft ethics guidelines, www.ukbiobank.com, BMJ 327 (2003), 700. Discussion of the biobank is made in Lancet 362 (2003), 834; Current Biology 13 (2003), R689-90. The use of DNA by police in the UK is discussed in Lancet 362 (2003), 927. Criticism of the Estonian Genbank is in www.openDemocracy.net (29 May 2003), 1-4. On the Icelandic genebank and Kari Stefansson, NatMed. 9 (2003), 1099.

Privacy in human research is reviewed in J. Law & Medicine 10 (2003), 410-34, 506-13. On privacy in UK law, Modern Law Review 66 (2003), 726-58. Sale of Canadian doctor's drug data has gone to court, Lancet 362 (2003), 884. Internet makes privacy more difficult,  Science 301 (2003), 1449. Consent to using family tissue is discussed in BMJ 327 (2003), 759-60. Family attitudes to using samples taken at coroner's postmortem exams in UK are reported in BMJ 327 (2003), 781-2. Identification of missing persons in mass graves in Iraq may need DNA analysis, Lancet 362 (2003), 1325-6.

A German teacher was refused a job because relatives have Huntington's disease, BMJ 327 (2003), 827. Genetic discrimination is discussed in J. Law & Medicine 10 (2003), 470-87;  Science 302 (2003), 745. DNA testing can check rhino poachers, NS (6 Sept. 2003), 9.

The text of the UNESCO International Declaration on Human genetic Data can be viewed on the UNESCO IBC homepage. It is also reproduced in BME 192 (2004), 13-20. The text of the European Group of Experts in Science and New Technologies on Genetic testing in the workplace is in BME 192 (2004), 21-4. The general use of medical examinatioNS for employment is discussed in J. Law & Med. 11 (Aug. 2003), 93-102. On genetic privacy, NEJM 350 (2004), 1452-3; NS (20 March 2004), 20-1. A study of patient information privacy in public lifts in hospitals is in BMJ 327 (2003), 1024-5; and in hospitals, Nursing Times 99 (2 Dec. 2003), 18-21; JME 29 (2003), 220-4, 348-52. China's freedom of information bill is reviewed in NS (13 Dec. 2003), 21.

A paper on the implicatioNS of genetic testing for the UK insurance industry is Community Genetics 5 (2002), 102-9. A comparison of insurance and testing in different countries is Simon, J. "Genetic testing and insurance: An international comparison", IJB 14 (Sept. 2003), 59-78; and on the general topic, Monash Bioethics Review 22 (Jan. 2003), 25-41; Lancet 363 (2004), 395-6; Eur. J. HG 11 (2003), 909-10. On law and biological and family identity, IJB 14 (Sept. 2003), 81-92.

A review of the proposed expansion of US federal DNA databases is GeneWatch 17 (March 2004), 3-6. DNA evidence in crime is discussed in NEJM 350 (2004), 313-4; NS (1 Nov. 2003), 18. National DNA databases need to be made safer, Lancet 362 (2003), 1761-2. The ethics of stored tissue archives is discussed in JME 29 (2003), 343-7; BMJ 327 (2003), 1304; Lancet 363 (2004), 377. On the Icelandic DNA database coding, Bioethics 18 (2004), 27-49. The German National Ethics Council has a new opnion on Biobanks for research (Contact Email: kontakt@ethikrat.org). A proposal for a new way to distribute and store genetic resources is in Nature Reviews Genetics 5 (2004), 223-37.

There is criticism of the use of ethnic profiling by Japanese police, Nature 427 (2004), 383. A criticism of the short 4 week period given in the UK for public comments on biobank is in BME 191 (2004), 1.

The Icelandic healthcare genetic database has been rejected by their Supreme Court, Nature 429 (2004), 118; NatBio 22 (2004), 500; NS (10 April 2004), 5. Estonian experience in genetic data confidentiality is reported in Law and the Human Genome Review 19 (July 2003), 147-58. A report from the French National Bioethics Committee on ethical problems of Biobanks is in Les Cahiers du CCNB 38 (March 2004), 3-29. In general on privacy, Health Law J. Special Edition (2003), 113-29; BMJ 328 (2004), 871-4. Genetic privacy is discussed in SSM 57 (2003), 2471-3; Lancet 363 (2004), 1238.
Mistakes in forensic DNA evidence are shown in Science 304 (2004), 959. DNA evidence has also exposed errors in the legal system, NS (24 April 2004), 6. On privacy on the Internet, Science 302 (2003), 1686-7. On the DNA of the Romanovs, Science 303 (2004), 753.

The Icelandic database project has been shelved as the Supreme Court judged privacy was in peril, Nature 429 (2004), 118. Governing UK biobank is discussed in TIBTECH 22 (2004), 284-5. DNA banking is called for in  Science 304 (2004), 1445. When asking people questions in a census many do not answer the questions that they see to be too private,  Science 304 (2004), 1452-3. On the ethics of public health surveillance,  Science 304 (2004), 681-4. Constructing ethical guidelines for biohistory is called for in  Science 304 (2004), 215-6.

Privacy is discussed in BMJ 328 (2004), 1265. A review paper is Schwartz, PM. "Property, privacy and personal data", Harvard Law Review 117 (2004), 2056-128. The US is still considering laws against genetic discrimination, NatGen. 36 (2004), 429-30. Fingerprint sensors may protect personal data, SA (June 2004), 80. A review of professional and hospital discrimination in US Court of Appeals cases is AJPH 94 (2004), 710-21. Microsoft is offering some marketers ways to bypass spam filters if they follow guidelines, NS (15 May 2004), 5. The genetic association database is reviewed in NatGen. 36 (2004), 431-2.

The document adopted in 2004 by the European Group on Ethics in Science and New Technologies, opinion number 19, "The Ethical Aspects of Umbilical Cord Blood Banking" can be downloaded from http://europa.eu.int/comm./eropean_group_ethics. A summary of the privacy laws in Canada is in Caulfield, T. & Ries, N., "Consent, privacy and confidentiality in longitudinal, population health research: The Canadian Legal Context",  Supplement, Health Law Journal (2004), 65pp. Other perspectives on the issues raised by genetic databases are raised in Health Law Review 12 (No.2, 2004), 11-7. The development of databases for poor people is discussed in Bhardwaj, M. "Rich databases and poor people: Opportunities for developing countries", TRAMES 8 (2004), 90-105. A national DNA bank in Gambia is discussed in NatGen 37 (2004), 785-6. Global networks for genetic disease research are discussed in NatMed. 10 (2004), 665-7. Consent for biobanks is discussed in Nature Reviews – Genetics 5 (2004), 485. On commercial sales of genetic information, Technology Review (April 2001), 40-6.

Privacy is discussed in J. Law, Medicine & Ethics 31 (Winter 2003), 663-71; Nursing Ethics 11 (2004), 366-77; MJA 181 (2004), 125-6. On forensic epidemiology, J. Law, Medicine & Ethics 31 (Winter 2003), 684-700. The Code of practice on access to personal information in the UK is in BME 199 (July 2004), 9-11 (www.healthcarecommission.org.uk). Banking umbilical cord blood in the UK is discussed in BME 198 (May 2004), 3-5. The UK Human Tissue Bill was modified because of research need, BMJ 328 (2004), 1518; NS (5 June 2004), 51. Obstacles to conducting epidemiological research in the UK are discussed in BMJ 329 (2004), 277-9; Science 305 (2004), 29; and in the USA, Science 305 (2004), 168-9. Disclosure of non-paternity is discussed in Lancet 364 (2004), 327-8.

In Switzerland a new law allows insurance companies to take out life insurance policies worth more than SFr400,000, BMJ 329 (2004), 70. In general on genetics and life insurance, CMAJ 170 (2004), 1421-3; Science 305 (2004), 183. Data protection is discussed in BMJ 328 (2004), 1437-8. On disclosure of personal medical information, AJMG 128A (2004), 261-70; Current Biology 14 (2004), R403. The question whether genetic information is a patients or the whole families is discussed in BMJ 329 (2004), 165-7. It may be possible to identify any animal in the world by a brief genetic sequence, NS (26 June 2004), 32-5. Computer privacy is discussed in SA (Aug. 2004), 10-2. China is introducing screening on text messages that persons send, NS (10 July 2004), 4. The location of cell phone users can be found, which may be both good and bad, NS (26 June 2004), 21; (17 July 2004), 4. The difficlutlies of conducting a census are discussed in Science 304 (2004), 1452-3.


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