Hearing on the possible uses and misuses of genetic information.
In summary, I will reiterate the five points I would like to leave with you today: First, the biological revolution has extraordinary power to do good. As long as the use of our new genetic knowledge is guided by the traditional ideals of the healing professions--to help improve the human condition without doing harm--we can expect real benefits to come of it. Second, however, we need to prepare for the fact that, like all powerful tools, genetic information can be misused and abused. As I hope to have illustrated, NIH has the will and ability to work with the American public and the scientific community in preparing for the responsible use of genetic information for now and the future. To date, the best example of that will is the precedent-setting work being conducted in concert with the human genome program through our ELSI program. Third, as a part of that work, it will be imperative to continue to protect the voluntary nature of genetic services. The rights of people to determine for themselves whether or not to pursue genetic information about themselves must be defended, even from the forced choices that discriminatory social practices may create. Fourth, in order to allow those who choose to do so to benefit from our new genetic tools, discrimination based on genotype must be prohibited as a matter of basic civil rights. And finally, in the bright light of the Human Genome Project and its ELSI program, it is important not to let genetics eclipse the important ethical, legal and social issues that attend other biomedical advances. It is the purpose of NIH's new center for science policy studies to illuminate this broader view of the road ahead. Thank you. I will be happy to answer any questions you might have.
Healy
B
B
D035843:Biomedical Research; D026724:Ethical Review; D004992:Ethics, Medical; D035082:Federal Government; D030661:Genetic Privacy; D005823:Genetics / Q000331:legislation & jurisprudence; D005838:Genotype; D033161:Government Regulation; D006801:Humans; D009316:National Institutes of Health (U.S.); D011287:Prejudice; D011640:Public Policy; D018570:Risk Assessment; D014481:United States