Private versus Public DNA

Does each individual own their DNA? Can we prohibit others from taking cell samples, if thet does not endanger us? Is the human genome something that we should hold in common, as a resource like the air or the oceans, or is it like mineral rights, which are controlled by those that own the land they reside under?

The Havasupai Indians sued Arizona State University for ‘misusing’ DNA samples:

Researchers and institutions that receive federal funds are required to receive “informed consent” from subjects, ensuring that they understand the risks and benefits before they participate. But such protections were designed primarily for research that carried physical risks, like experimental drug trials or surgery. When it comes to mining DNA, the rules — and the risks — are murkier.

Is it necessary, for instance, to ask someone who has donated DNA for research on heart disease if that DNA can be used for Alzheimer’s or addiction research?

Many scientists say no, arguing that the potential benefit from unencumbered biomedical research trumps the value of individual control.

“Everyone wants to be open and transparent,” said Dr. David Karp, an associate professor of internal medicine at the University of Texas Southwestern Medical Center in Dallas, who has studied informed consent for DNA research. “The question is, how far do you have to go? Do you have to create some massive database of people’s wishes for their DNA specimens?”

The Havasupai settlement appears to be the first payment to individuals who said their DNA was misused, several legal experts said, and came after the university spent $1.7 million fighting lawsuits by tribe members.

Even as the Havasupai prepared to reclaim the 151 remaining blood samples from a university freezer this week, Therese Markow, the geneticist, defended her actions as ethical. Those judging her otherwise, she suggested, failed to understand the fundamental nature of genetic research, where progress often occurs from studies that do not appear to bear directly on a particular disease.

One aspect of the suit is related to researchers using the DNA to investigate the anthropological origins of the Havasupai, which in large part contradicts the group’s folk history. To me, that seems like Christians arguing against evolution because they think it runs counter to Christian doctrine.

From a communitarian veiwpoint, the benefits that could be gained from collectively owning our species-wide DNA are great. Diseases might be cured, the history of our lineage could be exhaustively compiled, and other unanticipated advances could occur.

Individual genetic privacy — the information about what is in your genes and what it means for your health — is a concern largely arising from people’s concerns that they might be denied health insurance based on some genetic condition. Or possibly denied a job for similar reasons. The answer to that concern is to make it illegal for insurance companies to deny access to insurance based on genetic or other pre-existing conditions, which is notably a part of recent health care reforms. And likewise to make it illegal for companies to deny employment for simialr reasons. Notably, the health insurance reforms may in fact decrease the motivation of companies to deny employment to those with genetic conditions.

Group genetic privacy — like the collective genome of the Havasupai — is a more amorphous issue, simply because the boundaries that define groups are so variable. The isolation and language of the Havasupai makes their ‘groupness’ fairly strong, and because the legalistic nature of the relations between Indian nations and the US government, the Havasupai have a collective identity, and appointed officials to represent them. But who represents red-headed Scots-Irish people? Or American Jews of Sephardic origin? There is — in general — no organization empowered to act on the behalf of many, or most, interesting genetic groups.

And at the greatest collective level, the entire world population, no one is husbanding our genome. So, unless something is done, we will have a landrush, with companies patenting genes, and groups like the Havasupai carving out their own deals with researchers looking for clues in the corridors of the double helix.

In a world carrening toward open and public as the norm, we will need cultural and legal safeguards so that good can be done, and harm averted.