Ethical Aspects in Genetic Research
- Ajlan Tukun MD, PhD., Isik Bokesoy MD, PhD.,
Dept. Medical Genetics, Ankara University, Faculty of Medicine, Sihhiye, 06100 Ankara, TURKEY
Eubios Journal of Asian and International Bioethics 8 (1998),178-179

The basic goal of medical genetics is the diagnosis, treatment and prevention of hereditary disorders (1). Genetic diseases or disabilities affect about 3% of all pregnancies (2). As a result of the demand for genetics in medical applications, in the last few decades a lot of money and time has been spent by different institutes and companies to develop new techniques and their applications as well as to discover the human genome with its structure and function completely.

Worldwide there are more than 5000 specialists working on human genetics, and the majority are in developed western countries (3). Genetics has gained a central role in these nations as a result of the decrease in deaths due to non-genetic diseases such as infections and malnutrition.

Some new ethical questions may have arisen while some old ones have exacerbated with this impressive technological development (4). These include equitable access to services, voluntary versus mandatory counseling, directive versus nondirective counseling, testing and screening, safeguarding individual and parental choices, full disclosure of information, confidentiality versus duties to relatives at genetic risks, privacy of genetic information from institutional third parties, non-medical use of prenatal diagnosis (including choice of fetal sex, color, etc.), issues related with research and gene therapy.

A research scientist should be able to imagine as far as we can. I trust Einstein who said "Imagination is more important than knowledge". So, I would prefer not to be restricted with ethical or legal rules that would prevent me in my search after the answers to the questions posed by my scientific mind. On the other hand, I am responsible to want to guarantee that my research results will not do any harm to people. So, some should imagine, try and achieve new knowledge while others, persons or institutes, should check what is done in order to prevent any possible harm to individuals, society, and nature.

WHO says: "Every society ought to support national research ethics commissions to debate and recommend guidelines to control possible abuses in research, as well as to outline standards under which ethically acceptable research can be done. After general guidelines have been adopted, each proposal can be judged within the national policy."(3) The general research guidelines include:

  1. All participation in research should be voluntary and should follow established procedures for informed consent.
  2. Scientific freedom should protect researchers in academic centres. It's particularly important to protect researchers from possible pressure to conceal information and results when commercial involvement is at stake.
  3. Embryo and fetal tissue research has a unique importance in genetics. They should be discussed as separated from all other ethical issues in genetics.
  4. DNA banking is another subject that is often discussed with its multidimensional problems. The consensus is: DNA is both unique to an individual and shared by other individuals who are biologically related. The data concerning DNA should be accessible to law enforcement agencies and qualified researchers. However, institutional third parties should not to be allowed to use DNA to benefit an individual or family.

In addition to these international problems, we have to cope with the ethnic and national facts of our own country. If one is to carry out research in a developing country, "informed consent" becomes a major problem at the very outset, in informing the donor. Indeed this seems to be a global issue; but personally, my tendency is always to retain doubt as to the sufficiency of the information that could be given to a person for the aims of research in which he or she is supposed to participate as a donor. For it is indeed very difficult to make someone understand the long-term (5-10 generations) significance of the research on the genetic property which he or she is to pass only to the next generation. Research does not always fulfill an expectation on the part of the participator; usually not. Research demands from the participator a virtuous attitude of thinking universally towards the future, and this presupposes a learned person together with his or her welfare in a whole system of socioeconomic conditions. Whereas what we usually confront in our country are people striving for their survival and the survival of their family.

What is more, even when the donor recognizes the significance of the research, he or she still cannot know what he/she gives by giving the material necessary for research. For even the researcher cannot know what will come out of it. So the donor, unaware of the effects, results or changes it might cause, cannot know whatever right he/she has over the material he/she is to give for the research. Consequently, the researcher always faces a seemingly insurmountable lack of awareness on the part of the people asked to give their consent for conducting research on the material taken from them. You could get a consent, but you always remain in doubt as to whether the consent is sufficiently "informed" or not. This seems to be the case everywhere, but the fact is more striking in countries like ours.

Still, we would not have the same conditions with our colleagues in the developed countries even if we had "informed" consent. For we do not have enough capacity to work out all the genetic diversity of our country, Turkey. Although the high birth rate and consanguineous marriages make our country rich in some rare diseases and although we would prefer to keep this treasure to work for ourselves, our lack of human and financial resources causes a remarkable delay in reaching this valuable information.

Even if we could manage all these problems we would still have one great problem to cope with. Although we have three different ethics commissions within the Turkish Medical Association, Ministry of Health, and The Turkish Scientific and Technical Research Council besides local committees, I should admit the lack of regulation in practice. In fact, this is the result of a universal reality; Making rules does not mean everything. The most important and difficult thing is applying them. And this depends on the development of public awareness and education which will require considerable time to be spent with meetings, discussions, conferences, etc.

References

1. MW Thompson et al. Genetics in Medicine, WB Saunders Company, Philadelphia, 1991.
2. Assesing Genetic Risks: Implications for Health and Social Policy, Institute of Medicine (USA), Committee on Assessing Genetic Risks, 1993.
3. Guidelines on Ethical Issues in Medical Genetics and the Provision of Genetic Services, WHO Hereditary Disease Programme, 1995.
4. Universal Declaration on the Human Genome and Human Rights, Twenty-ninth Session of the General Conference, UNESCO, 1997.


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