18th International Privacy and Data Protection Conference

Legal and Ethical Implications of Biotechnologies - Genetic Information

September 19, 1996

Bartha Maria Knoppers, LL.D.

The concept of privacy has evolved from that of a right of property, to the personal right to be left alone, to a fundamental right based on two concepts; human dignity and respect for individual freedom, the latter understood as including informational self-determination. The translation of this fundamental right of privacy in modern medicine has taken the route of both the protection of personal data genera1ly, and the affirmation of the confidentiality of medical information. Currently, the protection afforded genetic information stems from that relating to the confidentiality of medical information which serves as the translation of privacy.

The mapping of the human genome and the impact of the information derived therefrom, is forcing a "re-mapping" of the ambit of protection of medical information. Analogies to HIV/AIDS information, to sensitive psychiatric information or to personal data protection may not be adequate. The very status of human genetic information or the material in which it is contained is varied, or, undefined, or controversial.

Genetic information has certain characteristics that make it unique. It is personal and yet, necessarily familial.It is sensitive, trasgenerational, and can have socio-economic implications.

It has been misinterpreted and misused for eugenic purposes. It is increasingly probabilistic, predictive and fast being revealed as a component of most common diseases.

Finally, while currently, genetic information is found in medical records, it is also found in every human cell, thus making such highly personal information potentially, the most "public".

International, regional and national protection of medical information has long been subsumed and actualized under privacy provisions or sometimes in specific statutes. Increasingly however, specific exceptions or reinforcements are required with respect to the disclosure of genetic information to the person tested, to family members, to third parties (insurers/employers), to researchers, or finally, in some limited circumstances to the State. It is in examining the possible ambit and meaning of these exceptions, that we will draw certain conclusions in favor of genetic information as both "normal" and "normative".