Who should know about our genetic makeup and why?
Recent developments in biology have made it possible to acquire more and more precise information concerning our genetic makeup. Although the most far-reaching effects of these developments will probably be felt only after the Human Genome Project has been completed in a few years' time, scientists can even today identify a number of genetic disorders which may cause illness and disease in their carriers. The improved knowledge regarding the human genome will, it is predicted, in the near future make diagnoses more accurate and treatments more effective, and thereby considerably reduce and prevent unnecessary suffering. On the other hand, however, the knowledge can also be, depending on the case, futile, distressing or plainly harmful. This is why we propose to answer in this paper the dual question: who should know about our genetic makeup and why? Through an analysis of prudential, moral and legal grounds for acquiring the information, we conclude that, at least on the levels of law and social policy, practically nobody is either duty-bound to receive or entitled to have that knowledge.
Takala
T
T
Department of Philosophy, University of Turku, Finland.
Gylling
H A
HA
D003219:Confidentiality / Q000331:legislation & jurisprudence*; D030881:Disclosure; D004992:Ethics, Medical; D030342:Genetic Diseases, Inborn / Q000175:diagnosis / Q000235:genetics; D030661:Genetic Privacy; D005820:Genetic Testing / Q000331:legislation & jurisprudence; D005826:Genetics, Medical / Q000331:legislation & jurisprudence*; D006801:Humans