Open Access News

News from the open access movement

Monday, May 28, 2007

Whose consent is needed to make human genome data OA?

Sandra Porter, Open Access vs. genetic privacy, Discovering Biology in a Digital World, May 28, 2007.  Excerpt:

...Will open access impede science by limiting genetic studies with families? ...

The April ALPSP conference began with songs for the open access choir. Microsoft's Lee Dirks painted visions of a utopian future where everything will be open, labs shall be judged by the worthiness of their databases, and even scientists will learn to share.  According to Dirks, "Open access to scientific content, specifically data, will become the norm." ...

But Dirks might be right. I learned from The Genetic Genealogist that a bit more DNA sequence data will be coming our way since James Watson and 454 plan to make his genome publicly available.

Whose genome is it anyway?

As I sat in the audience, it struck me that open access to data isn't an open and shut question. Many of the people who spoke about open access seemed unaware that there is another movement working to restrict it.

In fact, despite some of the statements and policies from one part of the NIH supporting open data, there are other forces in the NIH, ethical standards, and ironically the very groups funded through the human genome ELSI program that work to restrict access to genetic information. (The ELSI program was established by Watson to study the ethical, legal, and social implications of the human genome project.)


Isn't Watson's genome his own? Doesn't he have the right to decide what's to be done with it?  That is the question, isn't it?

If Watson has children, they share at least half of his genes and some of those genes may be connected with genetic disease. Does he really have the right to make information, about other individuals, known to the world?

Perhaps. But the NIH has rules for protection of human subjects and releasing his genome to the public runs smack up against one rule called "informed consent" and the privacy rule in a law known as HIPAA. If the Watson genome project were funded by the NIH, instead of privately, Watson would have to follow the same rules as NIH-funded researchers. His children would have to give their consent and agree to make the information public.

Comment.  Hard questions.  The best work to date on balancing medical privacy with OA to medical data is Expanding Access to Research Data: Reconciling Risks and Opportunities (from the National Research Council Panel on Data Access for Research Purposes, October 2005).  But it relies heavily on anonymizing data.  Genome data can be anonymized, but a genome that James Watson releases as James Watson's cannot be anonymized.