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.

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Uh Mike,

Never mind that there's no way HIPAA regulations would allow that, do we even want that?

Both Jim Watson and Craig Venter's genome sequences - that is - their personal genetic information has been released and is quite easy to get from the NCBI.

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.

This point is insubstantial. Consumer genetic testing is still fairly rare and specific. As our library of genetic knowledge grows, and our gene therapy techniques improve, the volume of known genetic information will increase dramatically; and the privacy and discrimination issues will become more widespread. Related lawsuits may well increase correspondingly. The fact that we haven't seen much of that yet just means we're tackling the genetic discrimination issue with foresight rather than afterthought.

But yeah, Coburn sounds like a jackass.

By Spaulding (not verified) on 15 Feb 2008 #permalink

On the other hand, I can see individuals jerking around not-for-profit researchers by charging the researchers for access to their genomes.

Like, say, "jerking" researchers around by refusing to volunteer for medical experiments, or as a patient to not volunteer for an experimental treatment the physician is working on over the established practice? Experimental subjects in pharmaceutical testing normally get paid - in some cases very well. Why should people not be able to require payment for the use of their genetic data? Or refuse participation altogether? That is not "jerking around".

More generally, privacy and private data has a very real monetary value, as exhibited by (for example) the amount of money per person that advertisers and other businesses are prepared to spend in gathering such data. If it has real value, why should the person who actually owns the data in the first place be the only one not receiving anything for it?

And if it has value, what expectation should we researchers have to be able to leech it off for free? You don't expect to get lab space, reagents or travel for free - you're happily paying for it with your grant - so why do you expect to get this data for nothing?

Sandra,

In the microbiome projects, we're putting together, human DNA sequence can not be released without a waiver. In fact, we're (the sequencers) not even going to be allowed to know who the patients are, other than via HIPAA-cleared deidentified data. If Venter wants to tell the world about his genome that's his business, but willing gave away that privacy right; it was not coerced from him. If there were pressure put on people to release their genomic information to healthcare companies (or their employers), that would be unethical.

Janne,

The issue arises from secondary uses of data (even if it's been deidentified). Suppose someone's genome holds allelic variation that could lead to a cure for AIDS, but the data were not collected for that purpose and were subsequently released through an NIH funded grant. Who owns these data? And at that point, are they public domain? This is not a trivial question. That's what I meant by jerking around researchers.