Should Personal Genetic Information Be Free?

The editors of the journal Nature write:

(Nature 451, 745-746 (14 February 2008) | doi:10.1038/451745b; Published online 13 February 2008)

Genetics benefits at risk

A rogue senator needs to be bypassed.

Technology development guru George Church -- aka the information exhibitionist -- is playing a salutary social role with his Personal Genome Project. Church is in the process of gathering phenotypic data and sequencing portions of the genomes of ten volunteers, including himself.... He intends to study how the genes of these people -- all but one of whom have revealed their identities -- influence their phenotypes, and to make those data public. Church's point is simple: information, including genetic information, can and should be freely available.

Whether or not one agrees with him, society had better be ready to deal with the results of such research, which is occurring against a background of explosive growth in the availability of genetic information. Consider that, in the five-and-a-half months since Nature last opined about this topic..., the number of diseases for which genetic tests are available to patients has grown by 8.4%, to 1,236.

This makes it all the more urgent that the US Congress enact the Genetic Information Nondiscrimination Act, which would protect people from being discriminated against by health insurers or employers on the basis of their genetic information. The entire scientific and medical community is adamantly supportive of this bill -- as is the House, which passed it on a vote of 420:3 last April. In previous Congresses, the Senate has twice passed it unanimously. These are sure signs of an idea whose time has come, given that no less powerful a lobby than the US Chamber of Commerce had twisted arms to try to prevent its passage.

But for seven months now, one senator, Tom Coburn (Republican, Oklahoma), has used a procedural manoeuvre called a 'hold' to prevent the bill from coming to a vote in the Senate. Although Coburn, a practising obstetrician, voted for the bill in past, he is now refusing to budge, knowing full well that if he does lift his hold and allow a vote, this would all but guarantee the bill's signing into law. (President Bush, during a visit to the National Institutes of Health a year ago, urged Congress to pass the bill; his administration also put out a written statement of policy supporting it.)

Coburn has said he won't support the bill without a change that would drive a huge hole through its protections. In essence, he wants to insulate employers from ever being sued for a discriminatory act if an insurer is also culpable in the same situation. To put a human face on it, let's say that Employer X, who is a major client of Insurer Y, asks Insurer Y to make life miserable for Employee Z by, say, denying her coverage based on a genetic predilection for breast cancer in her family. If Coburn had his way, the insurer could be fined, but the employer would be immune from being sued for damages by Employee Z.

It is hard to believe that Coburn is bargaining in good faith, given that he has put holds on at least 86 other pieces of legislation. Nonetheless, if his intention is to protect businesses from an avalanche of frivolous litigation, there's precious little to suggest that this is a serious danger, given the virtual absence of similar lawsuits in the 34 states that have independently enacted laws forbidding genetic discrimination by employers.

There is a way past Coburn. Under Senate rules, Democratic Senate Majority Leader Harry Reid could force the bill to a floor vote by allowing 30 hours of debate on it first. That kind of time is a precious commodity in a highly preoccupied Senate. But it's hard to imagine a more worthy cause for which to make room, or a more important legacy for this Congress -- and scientists should tell Reid as much.

Otherwise, the enormous research and clinical progress being made in the nascent era of personalized medicine will come crashing to a halt because people -- despite the efforts of George Church -- will remain rightly wary of taking genetic tests.

I agree with the editors that genetically-based discrimination by employers (except in very specific situations) should be prevented, but it sounds as if Church thinks genetic data--that is, identifiable genetic data--should be publicly released. Never mind that there's no way HIPAA regulations would allow that, do we even want that? I don't disclose all of my physical characteristics to complete strangers, why should I want to--or be forced to--do that with my genome?

On the other hand, I can see individuals jerking around not-for-profit researchers by charging the researchers for access to their genomes. On the other other hand (or maybe it should be the first foot...), if a private corporation makes money based on the content of your genome, maybe you should be compensated?

Discuss.