Open Access vs. genetic privacy

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Sandra Porter

Is the case for open access truly "open and shut"?

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


Microsoft's brave new world
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."

Since I've had a few data access issues of my own, I listened with mixed interest and skepticism, all the while wondering if Dirks had ever tousled with the problem of getting data, firsthand.

But Dirks might be right. I learned from The Genetic Geneaologist 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.

[Janet can speak to this better than I, but I think ethicists must constantly feel like Jiminy Cricket. Chirp! Pinocchio! Remember Gepetto! You can't tell people about his genes!]

It's not just DNA
I learned recently that scientific papers, by geneticists, are attracting new scrutiny as well. In the past, privacy wasn't as big of a problem. Scientific information was locked up inside of obscure inaccessible journals and the families participating in genetic studies weren't likely to go read the research papers.

Not so anymore.

Now, with an increasing number of journals accessible on the internet, study subjects can now go on-line, find the papers, and look at the pedigrees to figure out if detestable old Aunt Millie has the "Alzheimer's gene." If the scientists conducting the study didn't get informed consent, from every family member, to make the results public, they can be in trouble.

[Okay - it's not quite that simple, but keep in mind, this is one part of his genome that even Jim Watson isn't making public.]

I love being able to get data and literature through the web, and I don't want to see the science stopped because we can't keep secrets, but.. well, I respect the desire for privacy, too, and the right to keep some information to oneself.

How do we balance the societal benefits of open access with the individual's right to privacy?

Will geneticists have to be careful where they publish?

Or will family genetic studies be curtailed because the privacy rules and bioethics concerns are too hard to meet?

"Oh brave new world that has such people in it ..."
- the Tempest, William Shakespeare