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Parents might know what's best for their children, but do scientists?

Posted by Jesse Reynolds on January 23rd, 2009


Deborah Linebarger has involved her children, including Beckett, left, Sophie, right, and Alec, at rear, in her psychology research. (Ryan Collerd for The New York Times)

Over the weekend, the New York Times ran on article on the trend for researchers to use their own children as test subjects. Most of the examples cited were innocuous enough, typically limited to observation without significant intervention. Obviously, no scientist-parent would knowingly harm their own child. Fortunately, the piece acknowledged the sometimes-unseen risks posed by this dual relationship:

Some research methods are clearly benign; others, while not obviously dangerous, might not have fully understood effects. Ethicists said they would consider participation in some projects acceptable, even valuable, but raised questions about the effect on the child, on the relationship with the parent, and on the objectivity of the researcher or the data.

“The role of the parent is to protect the child,” said Robert M. Nelson, director of the Center for Research Integrity at Children’s Hospital of Philadelphia. “Once that parent becomes an investigator, it sets up an immediate potential conflict of interest. And it potentially takes the parent-child relationship and distorts it in ways that are unpredictable.”

Researchers themselves acknowledge the challenge of being simultaneously scientist and parent.

“I don’t want them to feel uncomfortable, like I’m invading their privacy,” said Dr. Linebarger, who ultimately set some boundaries. “When you mix being a researcher with being a parent, it can put your kids in an unfair place.”
While any use of human subjects must get approval from an Institutional Review Board, some researchers are not disclosing the participation of their children to the IRB:
Some scientists said that in studies with multiple subjects they considered it unnecessary to report their child’s participation, because they would face no greater risk than others. Some asserted that involving their children proved risks were minimal....

“I sign my own permission slips,” said Gedeon Deak, whose three sons have participated in his cognitive science studies at University of California, San Diego. He tells review boards his subjects are a “sample of convenience,” not randomly selected, but he has seen no need to specify that his sons are among the participants.
The scientists' confidence that they have the necessary skills and wisdom to decide what the IRB should know is the real danger, a situation that likely occurs more often than acknowledged.




Stem Cells in the Time of Fiscal Difficulties

Posted by Jesse Reynolds on January 22nd, 2009


Jensen blogs from his sailboat on the coast of Mexico.

David Jensen, blogger at the essential California Stem Cell Report, challenges the state's lavish subsidies for stem cell research in a time of major budget cutbacks:

As California's public universities are turning away students and state cash is being cut for projects ranging from research labs to affordable housing, the California stem cell agency is on track to give away $66 million later this month....

The disparity raises major public policy issues about the use of ballot initiatives to promote and protect various causes. Should the elderly and poor see their much-needed assistance and medical care cut while cash flows unimpeded, in this case, to researchers, some of whom are already exceedingly well funded?...

If California cannot get its financial act together in the next month or two, it will face problems of a magnitude that will dwarf such concerns as stem cell research.

I would add only that the recipient of the largest share of the recent facilities grants, and I believe the greatest overall grant recipient, is Stanford University, which is a private institution with the nation's third-largest endowment, recently reported at $17 billion.





Presidential Genes?

Posted by Pete Shanks on January 20th, 2009


[ This was originally posted as  "Will Candidates' DNA Play a Role in Future Elections?" at AlterNet. ]

Moments after Barack Obama was elected, pundits began to speculate about future elections. And for once there is a new idea to add to the horse-race discussions: some commentators have proposed that we look at candidates' genomes to discover if they have the qualities we need in a president.

Personalized genome scans will almost certainly be better, cheaper and much more widely available during the next presidential election cycle. It therefore makes sense to discuss this possibility now, outside of the partisan frenzy stoked by campaigns. The Wall Street Journal, the New England Journal of Medicine, and the New York Times have all given space to the idea, and the authors have taken very different positions.

Would an inspection of candidates' DNA be helpful? Could we learn enough about their health, character and ability to justify this intrusion into their genomic privacy? Should anything be off-limits? These are valid and interesting questions with important policy implications. Considering them in the context of a hypothetical election can also teach us something useful about how and when to apply the results of genetic tests to our own everyday lives.

Some enthusiastic researchers, notably the Personal Genome Project's George Church, think we should scan the DNA of all candidates, and publish the results. Public health scholars Robert Green and George Annas, on the other hand, warn against the possibility of "genetic McCarthyism." They're concerned that DNA results would be abused as a new form of opposition research, with dire and misleading warnings being broadcast in attack ads: "Can we risk as President someone who may [perhaps, eventually] suffer from a [potentially] debilitating disease?"

Even worse is the prospect of someone being asked to "prove" their racial purity with a genetic test -- and this has already happened, in Turkey. President Abdullah Gul is considered by some in the far right to be "soft" on Armenians because he has refused to condemn calls for an apology for the 1915 ethnic cleansing, which is widely regarded as genocide. One politician has called for him to demonstrate that he is not part-Armenian: "These days, scientists use DNA tests, not family trees, to identify ethnic identity."

Such an overtly racist abuse of testing may seem far-fetched here, though there are already tests that purport to demonstrate membership in particular Native American tribes, and indeed to show Jewish ancestry. More pressing is the possibility of misleading medical prognoses, and an early defense against this prospect may be better public understanding about what genomic tests can and cannot do.

In a sense, we have always used genes, very crudely, to help us choose our elected leaders. Two pairs of fathers and sons have held the highest office, for instance, and three Kennedy brothers have run for it. There are many other examples of families with several members elected to Congressional and other offices; the Udalls include two incoming Senators as well as another cousin who just lost his seat and several distinguished ancestors. Burke's Peerage is said to have claimed that every presidential election "has been won by the candidate with the most royal genes." Certainly, there are other factors -- policy can make a difference -- but some people do look on genetic inheritance as a qualification.

However, genomics is a science of statistical possibilities. Genetic tests can almost never tell us with certainty whether someone will come down with a debilitating disease in the next four or eight years. A few medical conditions can be predicted with real confidence from genetic data, but in almost all cases the most that can be said is that there is an increased or decreased chance of hypertension or cancer or some other disease.

Analyzing the effects of tests for multiple conditions complicates everything much further. If you have a 50% increased chance of heart disease but 40% less than normal likelihood of Alzheimer's and 30% less of Parkinson's (these are made-up numbers, as a simplistic example), is that on balance good or bad? Arguably, it's quite hopeful, since you can take effective preventive measures against heart disease through diet and exercise. But what if you have to consider twenty or fifty genetic predispositions: how do you factor them all in?

This demonstrates a major problem with generalized genomic tests, especially if they are to be used for such a complex question as choosing an individual for a particular job. George Church is missing the point when he says that "it is not like we are collecting horoscope data or tea-leaf data. These are real facts, just as real as bank accounts and the influence of political action committees or family members." What do the facts mean? How do you interpret them? The date of birth you give an astrologer is factual; the predictions are a matter of interpretation.

What any particular collection of genetic variants implies is a very tricky question. It's so difficult that the Departments of Health in California and New York have complained about direct-to-consumer genetic tests precisely because consumers do not have the expertise needed to evaluate the data without expert help. They have argued that companies selling gene tests are, in effect, practicing medicine without a license. (The best-known California firms involved have settled this dispute, but others have limited their activities.)

So how would voters and commentators interpret a candidate's gene scan? More than that, how would we make political judgments even if the genomic facts were more or less clear? President Lincoln may have had Marfan Syndrome, which could perhaps have been predicted from a genome scan. He may also have suffered from a form of depression that might have been reflected in his DNA. Would we have been better off disqualifying him? Would the nation even exist if we had?

Certain medical conditions are generally considered important for voters to know -- but even then, the case of Franklin Roosevelt muddies the matter. Hard as it is to imagine nowadays, he concealed from the public the fact that he was paralyzed and used a wheelchair. And he was elected four times and is generally ranked as one of the three best Presidents ever.

What was FDR's greatest strength? Many say it was his temperament. That may be partly inherited -- there are plenty of phlegmatic children of phlegmatic parents -- but there is no known specific gene for temperament, and therefore no genomic test. Even if we could test for a collection of genes associated with calmness in the face of crisis, the answer is very unlikely to be definitive. Stanford's James Gross has pointed out that "genetically identical people can give very different outward impressions because they think differently, they regulate their emotions differently." Genes, in other words, are only part of the story.

And sometimes what the genomic data suggest is just flat wrong. For instance, one anemic woman was surprised to discover that she had a gene for hemochromatosis, which involves abnormally high levels of iron in the blood. (Sounds like a country song: Who you going to believe -- the DNA print-out or your lying blood?) James Watson, the co-discoverer of the double helix and one of the few whose genome is public, does not suffer from either of two diseases for which he "has the genes."

Balancing the possibilities revealed by genomics is never going to be the best way to select a President. And learning how to interpret such tests for ourselves, for our own use, will itself be challenging. Sequencing technology will continue to improve; predictive interpretation will too -- but if you're looking for certainty, don't hold your breath.

Meanwhile Secret Service agents bag and trash any glass the President uses while away from the White House, so no one can steal his genetic secrets. It's probably just as well.





CGS issues biotech policy brief for President Obama

Posted by Jesse Reynolds on January 20th, 2009


CGS has released an eight-page brief of biotechnology policy recommendations for the new presidential administration of Barack Obama.

"Responsible Federal Oversight of the New Human Biotechnologies: Opportunities for the New Administration" [PDF] includes

1) Immediate opportunities for policy action;

2) How the Obama administration can reshape the public discussion of human about human biotechnologies to reflect widely shared values; and

3) Human biotech issues that the administration will likely face over the next four years.





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