In the coming era of personal genomics -- when we all can decode our genes cheaply and easily -- political candidates may be pressed to disclose their own DNA, like tax returns or lists of campaign contributors, as voters seek new ways to weigh a leader's medical and mental fitness for public office.
The technology is advancing so quickly that the next generation of presidential hopefuls may be judged not just on the content of their character but also on the possibilities revealed in their genes, highlighting the tension between privacy and public life.
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"DNA is not an issue in this campaign, but in the next campaign it will be bigger," says George Annas, a leading authority on bioethics and human rights at Boston University. "It's coming."
While still high, the cost of high-speed genetic analysis is falling fast. It took 13 years and $2.7 billion to determine all the DNA in the first complete human genome, finished in 2006. Earlier this month, a Mountain View, Calif., company called Complete Genomics announced that by next year it will be able to read out an entire personal genome for $5,000.
So far, hundreds of diagnostic tests are on the market, with hundreds more on the way. Mail-order genetic testing services are legion. At the last World Economics Forum in Davos, Switzerland, DNA test kits were handed out as party favors to 1,000 world leaders. Political demands for DNA disclosure may be only a matter of time, experts say. Even so, candidates don't have to make their medical records public and often have good reasons to conceal them, especially if, like many genetic tests, they only reveal the possibility of a future problem.
"I would be shocked if Americans and people in other countries don't want this type of data" about political candidates, says Harvard University genomics expert George Church. "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."
Our Public DNA
Harvard University genomics expert George Church is posting personal genetic information online through the Personal Genome Project.
Last year, genomics pioneer J. Craig Venter published all the DNA in his own genes in "The Diploid Genome Sequence of an Individual Human." in PLoS Biology.
Stanford University ethics scholar Tenielle Brown raised the question of genetic privacy and the president in "Genetic Testing for Presidential Health?"
Harvard health policy researcher Aaron S. Kesselheim explored "Privacy Versus the Public's Right to Know -- Presidential health and the White House Physician" in The Journal of Legal Medicine.
George Annas at Boston University considered "The Health of the President and Presidential Candidates -- The Public's Right to Know" in The New England Journal of Medicine.
Google co-founder Sergey Brin discussed discovering his genetic risk of Parkinson's disease on his personal blog "too."
To commemorate completion of the first full human genome, Nature magazine published the "Human Genome Collection," an online library of commentaries, technical papers and video interviews with scientists.
As organizer of Harvard's Personal Genome Project, Dr. Church is pioneering the public disclosure of detailed personal genetic information. Last week, he arranged for 10 prominent technocrats, including Harvard neuroscientist Steven Pinker and Internet visionary Esther Dyson, to post all their available DNA sequences, along with supporting medical data, cell samples and other information, online where anyone can analyze them. They are the first of what he hopes to be 100,000 personal genomes on the project's public Web site. So far, 6,000 people have volunteered.
More than partisan curiosity is driving interest in a presidential genome. During the 20th century, 14 of 19 U.S. presidents suffered significant illnesses while in the White House, from Woodrow Wilson's incapacitating stroke to Ronald Reagan's colon cancer, says Harvard health policy analyst Aaron Kesselheim. More often than not, he says, the ailing presidents and their physicians withheld the medical data that would have allowed the public to judge the true extent of their condition and, more importantly, how it affected their decision-making ability.
The current candidates and their running mates, under no legal obligation to disclose anything about their health, have been reluctant to make public all their medical records. Mandatory publication of some genetic test results might make it harder for the White House to mislead the public about a president's health risks.
In many ways, though, our genome can be misleading. "Sometimes, there's less to it than meets the eye," says Stanford University biomedical ethicist Mildred Cho.
Rosalynn Gill, chief scientific officer at a consumer genetics firm called Sciona, was among those who made their genomes public last week. She was surprised to discover she carried a gene for hemochromatosis, in which abnormally high levels of iron build up in the blood, since she actually is chronically anemic. "My physical manifestation is quite the opposite of my genetic findings," she says.
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Will We Vote Against a Candidate's DNA?
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Will We Vote Against a Candidate's DNA?
Will We Vote Against a Candidate's DNA?
Dr. Pinker says his personal genome revealed that "I have some susceptibility to having irregular menstrual periods." Others, however, learned they faced higher risks of cancer, tuberculosis and neurological disorders.
But blanket disclosure of the entire genome of the man or woman in the White House could be a mistake, at least for the foreseeable future. "The inflammatory and prejudicial information outweighs the gain from knowing it," Dr. Kesselheim says. "I would be reluctant to cross that bridge until the science is much more advanced than it is now."
No one knows how genetic disclosures about psychiatric risks might tip the balance of a hotly contested election. "Imagine the political advertising in the day when we have this kind of information in place," says University of Pennsylvania privacy expert Anita Allen. "It would end up on sleazy blogs and in attack ads."
Would voters change their minds about candidates if they could tell which among them had a higher genetic risk for cancer, stroke, heart attack, Alzheimer's disease, bipolar disorder or depression? Inevitably, analysis of any candidate's genome will always reveal something amiss, Chicago-Kent College of Law Prof. Lori Andrews says, since we all have at least 15 or so potentially harmful mutations. "We may knock out some great candidates," she says.
Legal measures designed to keep employers and insurers from discriminating against people based on their heredity may offer little protection to politicians, despite new federal legislation signed into law last spring, Stanford biomedical ethics scholar Tenielle Brown writes in the current Journal of Health Care Law and Policy.
So far, no one has tested the legal limits of a candidate's genetic privacy. As public figures, they may not have much. "They are not private people when they run for president," says Henry Greely, director of Stanford's Center for Law and the Biosciences. "Candidates may have the right to refuse to disclose genetic data, but their refusal is something that voters could and probably should hold against them."
While medical records can be locked away, it's not so easy to control access to DNA samples. "It can be picked up from a coffee cup or a hairbrush," says Dr. Annas. "People can take a copy and decode that information and learn things about you that nobody else knows, including you." Only 10 states have laws that make it illegal for DNA to be analyzed without the donor's consent.
While pundits ponder the political value of the presidential genome, investors may be tempted by the new technology to seek the genomes belonging to key corporate decision makers.
In September, Google co-founder Sergey Brin revealed that his personal DNA analysis showed that he might be at higher risk of Parkinson's disease, a progressive movement disorder accompanied by mental side effects that might some day affect his business acumen. Mr. Brin disclosed his risk to promote his wife's DNA testing service, not to warn stockholders. His revelation, though, led some analysts to speculate that business leaders and investment managers also could be asked some day to make their genome a part of their public resume.
"In the future, should we ask CEOs for their genetic profiles? Maybe we should," says Dr. Allen, "if we believe this kind of testing could tell us something that would save shareholders money."
Robert Lee Hotz shares recommended reading on this topic and responds to reader comments at WSJ.com/Community. Email him at firstname.lastname@example.org.
Robert Lee Hotz
Wall Street Journal
31 October 2008