DNA Fingerprinting and Privacy OLD News
Extracts from EEIN 1991-1994. Latest news is at the bottom. Provided by Eubios Ethics Institute , at http://eubios.info/index.html.
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Abbreviations for journals
A general paper on the ethical duties in presymptomatic genetic screening when applied to a clinical case is J.Adams (1990) "Confidentiality and Huntington's chorea", J. Medical Ethics 16: 196-9.
The use of DNA identification for legal questions is discussed by D.L.Burk, "DNA identification: possibilities and pitfalls revisited", Jurimetrics J. (Fall 1990), 53-85; and A.A. Moenssens, "DNA evidence and its critics-how valid are the challenges?" Jurimetrics J. (Fall 1990), 87-108.
A note on the disposal of samples taken for DNA fingerprint analysis after their use in the U.K. is in NS (23 Feb 1991), 58. A letter on the use of DNA fingerprinting in India is in Nature 350 (1991), 387.

On the wider issue of biodiversity of human beings, efforts are being made to store genetic material from the many races and tribes of the world before isolated tribes are intermixed and lost; Science 252: 1614-7. This is scientifically useful, but careful ethical standards need to be maintained in order that genetic privacy is maintained and that no misuse of the information occurs in the future. On the use of genetic tests on past remains see Nature 352: 381-2, and E. Hagelberg et al., "Identification of the skeletal remains of a murder victim by DNA analysis", Nature 352: 427-31.

There were recently three editorial comments on the human genome and ethics in Nature 351: 507, 591; 352: 11-4. These included reports on a recent NIH-sponsored meeting in Washington, which continued the line of statements that international consensus on the use of genetics and the genome project should be reached, but did not agree with the signing of an international treaty. See a letter in Nature 352: 368. Some of the comments in these editorials were good, but others left much to be desired, and I sent the following letter to Nature. I have not heard from them, so I present it below for your thoughts:
Justice and Genetic Screening
SIR It is to be commended that some of the ethical issues associated with science are being discussed in Nature. However, the quality of the ethical arguments, or statements, is sometimes poor.
A recent editorial (Nature 351 , 591: 1991) states that "a rule that insurance companies should not seek genetic information about potential policy-holders would be unjust to those free from defect". Why is it unjust for the "healthy" to support the treatment of the sick? The expression "free of defect" is to indirectly call the genetically sick "defective". This is not the language we should be reading from an editor of Nature. As a later editorial comment points out, everyone of us contains many misfunctional alleles, and all people have some "defects" or "abnormality" (Nature 352 , 11-14: 1991). But this review still asks the question why people relatively free from identifiable genetic "abnormality" should pay for the care of the sick. This is against the widely accepted ideas of justice in society. Justice is to support the sick, disadvantaged, and anyone who needs help, whether because of "accidents" of nature or nurture. A widely accepted theory of justice would say that a just society is the society we would all agree on if we did not know what position, or state of health, that we would have in that society before we entered it.1 It is not unjust for the healthy to support the sick to a reasonable standard of care, but it is unjust to the sick to discriminate against them.
Contrary to that review, the principle of discrimination has not been conceded despite some current cases, and there is no evidence that preventing commercial insurance companies from exploiting people is unsustainable. Several countries are considering such legislation because they recognise the principle of justice. The only longterm solution may be a national health care service,2 but it may still be sustainable to enforce antidiscrimination standards on insurance companies.3
We need to consider the our ethical duties from the principle of justice to people of future generations also.4 Although the recent NIH-supported conference on the ethics of the genome project (Nature 351 , 507: 1991) did not reach a consensus on whether an international genome treaty is practical, the conclusion of many conferences is that international management is required.5 The question is how to do this. As an immediate step, an international committee or working group should be established to discuss these issues, together with the questions of ownership of the information.6 There also needs to be discussion of the eugenic use of genetic knowledge, but, as these editorials mention, rational ethical and scientific discussion of eugenics is difficult. Nevertheless, serious international discussion must begin.

1Rawls, J. A Theory of Justice (Boston: Harvard University Press 1972).
2Holtzmann, N.A. Proceed with Caution (Baltimore: John Hopkins University Press 1989).
3Gostin, L. American J.Law & Medicine XVII: 109-44 (1991).
4Macer, D.R.J. Shaping Genes (Christchurch: Eubios Ethics Institute 1990).
5Z.Bankowski & A.M.Capron, eds.Genetics, Ethics and Human Values. Human Genome Mapping, Genetic Screening and Gene Therapy (Geneva: CIOMS 1991).
6Macer, D. Bioethics

A new law in California (dependent on the Governor's signature) bans the use of genetic information to discriminate among people in selling health insurance or in making employment decisions; Nature 353: 5; Science 253: 1484. However, the bill has an 8-year limit, due to pressure from insurance companies. This is the first such bill to be passed in the USA, but because most companies do not expect to use genetic tests for the next few years it will not make such a great impact unless extended. To be consistent with the principle of justice, all medical information should be included. On the importance of individual genetic privacy, especially as results of the genome project add to our genetic knowledge, see Washington Post (20 Oct 1991), A6.
The AMA Council on Ethical and Judicial Affairs has presented a report, "Use of genetic testing by employers", JAMA 266: 1827-30. The guidelines are intended for physicians, to examine their participation in such testing. See also JAMA 266: 1835-6.
In Britain the question of whether people should be asked by insurance companies about the results of HIV tests is being debated; BMJ 303: 327-8. If these questions put people off having HIV tests than it is better to ban such questions, and it would also be consistent with the privacy of medical information. To allow such questions, as for genetic diseases, is a precedent that may result in a group of uninsurable people. In California, in 1985 a law was made to ban the use of HIV tests by health insurers, though life insurance plans can use the results of HIV tests.
On the confidentiality problems of adolescents in the USA see BMJ 303; 539, for a review of a recent OTA report. A review of the WHO survey, Is the Law Fair to the Disabled? A European Survey (1990) is in Social Science & Medicine 33: 745-8. On discrimination against the mentally ill see BMJ 303: 804-5; MJA 155: 68-71. On deaf people's opposition to cochlear implants see MJA 155: 212-4.
In Britain, people should have complete access to their own health records, according to the Health Records Act 1990, which became effective on 1st November; Lancet 338: 567. On the editing of medical records see BMJ 303: 349-51.
Also related to the issue of insurance and genetic tests, but of a more positive note; the American Blue Cross and Blue Shield Associations announced in June that they would cover the costs of periodic testing for adult diseases; Amer. J. Nursing (Aug 1991), 11; Lancet 338: 813.

In the US, police authorities including the FBI are adding the DNA fingerprints of criminals to their record files: NS (21 Sept 1991), 19. Doubts on the numbers used in DNA finger-printing cases in the USA is expressed in a letter in Nature 353: 121-2. The estimates of sequence lengths appear to vary widely among different researchers. See also Lancet 338: 689, Human Genetics 87: 632; J. Forensic Sciences 36: 979-90, 991-8. On DNA tests and the Hardy-Weinberg Equilibrium see Science 253: 1037-41.

A new computer aided technique has been described; A.J. Jeffreys et al., "Minisatellite repeat coding as a digital approach to DNA typing", Nature 354: 204-9, see also p. 184; NS (23 Nov 1991), 14; Lancet 338: 1327. This technique removes almost all of the doubt from the fingerprinting, and it can be used on degraded DNA samples, because the technique measures the sequences differences in the minisatellite repeat regions rather than the length differences.
The use of PCR DNA typing is discussed in Nature 354: 179. Errors in DNA fingerprint profiles are discussed in Nature 354: 114; and on courtroom applications see TIBTECH 9: 215.
DNA fingerprinting continues to be widely applied to other organisms; The Plant Cell 3: 1143-5; and examples on lions; J. Heredity 82: 378-82; on museum bird specimens; Nature 354: 113; and on honeybees; J. Heredity 82: 391-6.

There have been recent hearings in the US Huose of Representatives Committees on the privacy issues arising from the Human genome project and genetic information. A working group on ethical, social and legal issues is discussed in Human Genome News (Nov 1991), 7-9. They are expected to report on their findings in 1-2 years.
There has been criticism in the U.K. over the police collection of DNA fingerprints of criminal suspects; NS (18 Jan 1991), 12; Nature 355: 191. The civil rights group Liberty is attempting to take the London Metropolitan Police to the European Court of Human Rights over the issue where a cleared suspect found that his DNA fingerprint had been entered to the database of DNA fingerprints without his consent. On the issue of privacy see J.E. Cooper, "Balancing the scales of public interest: medical research and privacy", MJA 155 (1991), 556-60.
There is also controversy in the USA on the reliability of DNA fingerprinting with the publication of a paper; R.C. Lewontin & D.L. Hartl, "Population genetics in forensic DNA typing", Science 254 (1991) 1745-50. The concerns are not new but an official of the US Dept. of Justice asked them to reconsider publication, which has made the controversy greater; Science 254 (1991), 1721-3, Nature 354 (1991), 500; 355: 207-8; BMJ 304: 139-40; Lancet 339: 117. The say that ethnic variations in the frequency of particular tandem repeat sequences make the probability estimates that are quoted in court room's inaccurate. They suggest approaches to deal with this issue of subpopulation heterogeneity. Until subpopulation profiles and controls on the variable number of tandem repeats are complete the technique should be of limited value in courts, they claim. A rebuffal and counter argument, supporting the current utility of DNA typing is R. Chakraborty & K.K. Kidd, "The utility of DNA typing to forensic work", Science 254 (1991), 1735-9. A report by the US National Academy of Sciences also adds to the debate. At least the questions may lower the often incredibly high probability claims that accompany DNA fingerprinting evidence in courts.
In Germany from July, new credit cards with a microchip will contain the health records of people in three regions with more introductions to follow; Lancet 339: 296. There are some concerns about privacy.

The controversy in the USA on the reliability of DNA fingerprinting was discussed in EEIN 2: 23. The FBI has said that it will look for better data on the genetics of ethnic populations; Nature 355: 663. More comment; Nature 355: 667; Science 255: 717-20, 803-4, 1050-5; SA (March 1991), 14-5; PNAS 89: 2556-60; Human Biology 64: 141-59, AJHG 50: 440-3.
Even in the popular press there are increasing numbers of articles about genetic fingerprinting. One example is J. Keehn, "The long arm of the gene", in American Way (15 March 1991), 36-40. It discusses the new Virginia police DNA fingerprint database. The ASHG statement on genetic privacy is reproduced in AJHG 50: 640-2. Genetic discrimination is the topic of several papers; M.R. Natowicz et al., "Genetic discrimination and the law", AJHG 50: 465-75; P.R. Billings et al., "Discrimination as a consequence of genetic testing", AJHG 50: 476-82. There are some examples of cases in North America where discrimination as a result of genetic testing information has already occurred. Another bill has been introduced to the California state assembly to attempt to prevent genetic discrimination, following last year's Governor's veto of a bill the assembly had approved. A position paper has been released by the Council of Responsible genetics in Boston (see Genewatch address at the back of this issue). See also JAMA 267: 1207-8.
There remained controversy over the gender testing proposed for Olympic athletes, using the sry gene marker; Lancet 339: 354; BMJ 304: 336; JAMA 267: 850-3; Science 255: 1073.
A new European directive may interfere with the use of confidential medical records in epidemiological research; BMJ 304: 727-8. Scottish guidelines on protecting patient information are in BMJ 304: 735. An editorial on medical confidentiality and police requests is in JRSM 85: 187-8.

Reviews on the use of DNA fingerprinting are in TIBTECH 10: 96-102. The use of mitochondrial DNA mapping to relate salamanders is reported in Nature 356: 706-8. Fingerprinting can also be used to identify cells which is useful for cell cultures; Nature 357: 261-2. The fingerprinting of Lincoln's samples will wait for the clarification of the entire Marfan's syndrome gene; Science 256: 446.
The debate on the use of fingerprinting in criminal cases in the USA continues, although the Academy of Sciences report approves it's use, see NS (18 April 1992), 3, 10; Nature 356: 483, 552, 357: 355; Science 256: 300-1, 593; AJHG 50: 869; Lancet 339: 1165. Genetic fingerpirnting tests were used to identify crash victims in the Airbus crash in January, that occured in France; NS (11 April 1992), 6. The PCR has been used for forensic cases in Italy; Nature 356: 471.

The debate on the roles of scientists in court cases involving DNA fingerprinting is discussed in Science 257: 732-6. Letters on the issue of matching DNA fingerprints (EEIN 2: 52) are in Science 256: 1743-6. A US National Academy of Science panel recently supported the scientific validity of using DNA fingerprinting in court cases, saying that it provides reliable evidence; Biotechnology 10: 625. A legal viewpoint is G.J. Annas, "Setting standards for the use of DNA-typing results in the courtroom - The state of the art", NEJM 326: 1641-4. Forensic analysis is being used to identify corpses in Guatemala; Science 257: 479.
Use of DNA fingerprinting in conservation of bears is reported in Nature 358: 197. It is also being used to trace the evolution of African Cichlid fishes; Nature 358: 578-81. Australian racing horses are to be DNA fingerprinted from September, for identity purposes; NS (1 Aug 1992), 5. (see also genetic engineering sections on plants and animals) . It can also be used to look at disease transmission; P. Godfrey-Fausett et al., "Evidence of transmission of tuberculosis by DNA fingerprinting", BMJ 305: 221-3.

Denmark has passed a law banning the use of genetic testing, and it should have been enacted since 1 July, however it is still being debated how to enact the law; Biotechnology 10: 628. Trade unions are opposing it, because they say some testing may be useful to protect workers; NS (11 July 1992), 6.
The comments of the UK minister for trade and industry on the use of genetic screening by employers or insurers are in BME (June 1992), 2. Comments on personal health records by D. Black are in J. Medical Ethics 18: 5-6.
In the US state of Wisconsin , a bill restricting the use of genetic testing for health and life insurance has been passed; geneWATCH 8(2), 10. Meanwhile the FBI has attached strings to the research use of its database on DNA, saying that FBI scientists should be coauthors; Nature 357: 618. A debate continues, though the research use of the data will not touch on privacy issues if no identification is given to the samples.
A report, Genetic Testing and Privacy (French and English, 111pp.) has been released by the Privacy Commissioner of Canada. It calls for additional privacy laws to protect people, above the existing privacy laws. Address of the Privacy Commissioner of Canada; 112 Kent Street, Ottawa, Ontario K1A 1H3, CANADA.

There has been recent debate on the reliability of probability estimates in DNA fingerprinting with implications for court cases (EEIN 2: 52, 66). In the USA three state courts in the last four months have said that DNA evidence is not permissible; Nature 359: 349. A German federal Court, in Karlsruhe, has said that DNA evidence is admissible, but only as supporting evidence, and has overturned a 1990 rape conviction; NS (19 Sept 1992), 5. A scientific/mathematical paper on the issue is J. Brookfield, "The effect of population subdivision on estimates of the likelihood ratio in criminal cases using single-locus DNA probes", Heredity 69: 97-100. He argues that the population subdivision effect may be minor. See also an editorial in Medicine, Science and Law 32: 185-6.
The US military will soon take samples from all recruits to make a record of DNA fingerprints to aid recognition of bodies; HCR (Sept.-October), 22: 48.
The use of DNA probes to detect plant pathogenic bacteria is reviewed in J. Biotechnology 203-20. The fingerprinting of banana is reported in Biotechnology 10: 1030-35, 1178-83. Analysis of faeces and excrement can be made by PCR, and this may be useful for conservation of endangered animals; Nature 359: 199.

US courts are still debating the reliability of DNA fingerprinting, while it is generally used in Britain; BMJ 305: 973-4. The frequency of matching DNA fingerprints and the use in forensics is debated in AJHG 51: 1164-8. The use of microsatellite repeat sequences in single cells is reported in AJHG 51: 985-91. Genetic differences in four fingerprinting loci in Finnish, Italian, and mixed Caucasian populations are reported in PNAS 89: 10583-7.
The problems of DNA banks are discussed in the context of the current DNA banks in the USA in AJHG 51: 1169-70. Privacy issues also arise with computerised medical records; MJA 157: 223-5.
The use of DNA fingerprints to mark cell lines is a further scientific use of the technique; Nature 359: 681-2. The use of molecular biology, especially PCR, to identify gut infections is reviewed in Gut 33: 1441-3.

A review over the use of DNA fingerprinting frequencies in court is B.S. Weir, "Population genetics in the forensic DNA debate", PNAS 89 (1992), 11654-9. A critique of the National Research Council report of May 1992 is in Science 259: 748-9, 837. A conference report is in Science 259: 755-6. Analysis of the profiles can give data that is race-linked, making it possible to guess the race of suspects; NS (23 Jan 1993), 6. A court case from Massachusetts Supreme Court rejecting the admissibility of DNA fingerprinting tests is discussed in AJLM XVIII (1992), 287. A general discussion of expert witnesses in court is in BioScience 42 (1992), 2-7; Biotechnology 10 (1992), 1608.
DNA analysis is being used in the recovery program of the endangered Puerto Rican parrot, PNAS 89 (1992), 11121-5. Breeding between the most unrelated individuals is being encouraged. DNA analysis of a pest, whitefly species, is being used to develop pest control programs in the USA, Science 259: 74-7. The use of the PCR for diagnosis of meningococcal meningitis is reported in Lancet 340 (1992), 1432-4, and for detection of E.coli in sewage, AEM 59: 353-7.

A UK case where a man convicted of a crime by DNA fingerprinting, who has later been shown to be innocent, has lowered the confidence in the use of DNA data in courts; NS (6 March 1993), 14-5. Of course, it should only be used as supporting evidence. A review pointing out the continued use of it in courts is in BioScience 43: 149-57. An editorial on the issue of using science in courts is in Nature 362: 481.
Critique's of the US National Research Council 's report on DNA fingerprinting are in Science 259: 585, 647-8, 748-9, 837, 755-6; AJHG 52: 437-40. Papers on the statistical probabilities of matching RFLP patterns (DNA fingerprints) are in AJHG 52: 305-11, 491-7. The use of genomic DNA sequencing in a rape case is reported in Nature 361: 595-6. Sequencing should remove most doubt, if over a long region of DNA.
DNA fingerprinting is being applied to slugs in the UK to trace the growth of different species, as they plague 30% of crop yields.

A US murder trial recently used reference to DNA sequencing of a tree at the site of a crime to show that a suspect had been there, a new variation of DNA forensic analysis; NS (29 May 1993), 6; Newsweek (28 June 1993), 50; Science 260: 894-5. A review of DNA on Trial: Genetic Identification and Criminal Justice , ed. P.R. Billings (Cold Spring Harbor Lab. Press, 154pp., US$55) is in Nature 363: 122.
Letters on the National Research Council Report on DNA finger-printing continue to be published, EEIN 3: 37, Science 260: 473-4, 1057-60, 1221. A review of the techniques is in Current Biology 2 (1992), 850-6. A kinship bioassay on hypervariable loci in blacks and Caucasians is in PNAS 90: 1892-6. Mitochondrial DNA studies have been used to help identify lost victims of human rights abuses in Guatamala; JAMA 269: 1911-3.
The DNA analysis of an extinct plant is reported in Nature 363: 677. The plant was preserved in amber about 25 million years ago. In the genome section below, the oldest DNA analysis yet on record, from 120 million years ago. DNA studies on the ancestors of maize are in PNAS 90: 1997-2001; on the success of beetles, PNAS 90: 2242-5; On stickleback behaviour, Nature 363: 255-7; on the coelacanth, Nature 363: 405; and on kinship affects in cannibalistic salamanders, Nature 362: 836-8.

The UK Royal Commission on Criminal Justice calls for DNA databases and the taking of DNA from all suspects ; NS (10 July 1993), 7; Nature 364: 179. Reviews of forensic uses of PCR are AJHG 53: 1-5; JMG 30: 625-33. On the US National Academy of Sciences report, and reliability of DNA fingerprinting are Int. J. Legal Medicine 105: 361; Science 261: 13; AJHG 53: 314-23, 324-9.
The use of DNA to trace the origins of Polynesians is in NS (10 July 1993), 17; and Europeans, Science 260: 1767-8; Newsweek (26 July 1993), 50. DNA studies of shrimps, Science 260: 1629-34; and fish, Nature 364: 330-4; are also reported.

Comments on scientific evidence in court rooms are in Biotechnology 11: 1108. It reviews the Daubert case in the US Supreme Court, in which they ruled federal judges should determine the permissibility of using experts in court, especially regarding fingerprinting cases. The UK situation is reviewed in BMJ 307: 817-8.
The British home secretary has announced the establishment of a DNA fingerprint database for all convicted criminals; Nature 365: 596. Technical comments on the reliability of DNA fingerprinting from sperm samples or small numbers of cells are in BMJ 307: 758. The identification of individuals in ancient human remains by DNA techniques is reported in AJHG 53: 638-43.
The use of DNA fingerprinting in Humpback whales has found that they continue to have wide genetic variation (important for survival), probably because of the long life span and ban on hunting; PNAS 90: 8239-43.

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