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NGS Leaders Blog

Would You Vote for Genomic Screening of Newborns?

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Editor’s Note: The following is a guest post by Robert C Green, MD, MPH, Associate Professor of Medicine in the Division of Genetics at Brigham & Women’s Hospital, Boston, and Director of the Genomes2People research program, www.genomes2people.org  


October 31, 2012 

Robert C Green : Genetic Screening NewbornsWhat would it be like to use genomic sequencing for newborn screening?

Would you want to know all, part or none of your baby’s genome?

Where will newborn sequencing save lives and where will it needlessly inflate fears and medical costs?


At Brigham and Women’s Hospital in Boston, there are 8,000 births a year, and a growing program in translational genomics research called Genomes2People.

We have been thinking about these questions and have started to gather pilot data from the parents of newborns. We’ve already learned that, when asked, more than 70 percent of nearly 300 parents of healthy newborns say that want genomic screening!

We have proposed a pilot study to complete this survey and start piloting newborn screening through genomic sequencing under carefully monitored conditions.

Our proposal is one of three finalists in a competition organized by the Brigham - the BRIght Futures Prize. The winner will be selected by competition for public votes, with a $100,000 grant at stake.

Anyone can cast a vote (once) before November 1st for any of the three proposals. To see more about the contest, visit:http://brighamandwomens.org/research/BFF/default.aspx

 

They are all excellent projects in their own right – the other two tackle questions in multiple sclerosis and the immune system - but I’m convinced that members of the NGS Leaders community will be particularly intrigued by our efforts to study the potential medical impact and ethical issues surrounding newborn genome screening.

If you agree, we’d welcome your vote for our project before November 1 at http://bwhbriwebmaster.partners.org/?p=708 

Thank you for voting!

Political Genomics: All the President’s DNA

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Editor’s Note: We are pleased to share an article submitted by Jeffrey Rosenfeld, PhD. Jeffrey is a Bioinformatics Scientist in the Division of High Performance and Research Computing at the University of Medicine and Dentistry of New Jersey (UMDNJ) and a Research Associate in the Division of Invertebrate Zoology at the American Museum of Natural History. 


rosenfeldOctober 8, 2012 : Jeffey Rosenfeld :  As the 2012 political season heats up, the Democratic and Republican parties (and their Super PACs) are trying to do whatever they can to get an edge for their candidates – from the presidential race to thousands of other state and local elections. Usually, the emphasis is on finding political and character flaws in one’s opponent rather than highlighting one’s own qualities.

Given the ease with which genetic information can be obtained, it seems increasingly likely that genetics will one day play a role in U.S. presidential or congressional elections. Harvard’s Robert Green discussed this issue in a widely read New England Journal of Medicine article in 2008. Since then, the amount of personal genetic information available has increased dramatically as the price of obtaining such information has plunged. Today, the cost of personal genotyping from 23andMe has dropped to $299. Full genome sequencing is available from services provided by Illumina and Knome for around $5000 Either way, these services can provide a rough description of an individual’s ethnicity, drug response and genetic disease risks. 

Offensive or Defensive Genetics 

So how might personal genetic information enter the political sphere? A candidate could have his/her genome profiled and publicize those genetic traits inspiring strength and confidence. Such attributes as long life, low propensity for cardiac disease or cancer and the absence of a mutation predisposing for Alzheimer’s, could emphasize the viability of a candidate. This would extend the current practice where (some) candidates release limited health information and tout the longevity of their parents and relatives. Moreover, the candidate could point to features in their ethnic background, perhaps to emphasize ancestral diversity (or purity), depending on the specifics of the political contest.

Personal genome screens can also shed light on (if not necessarily predict) complex traits such as intelligence and obesity. A flamboyant governor could argue that his excess weight was due to an inherited predisposition, not by lack of exercise or self-will.

A more insidious possibility would be for a candidate to surreptitiously obtain a DNA sample from his opponent and have it profiled. (Reporters for New Scientist magazine showed this was feasible a few years ago.) As any CSI aficionado can attest, obtaining a suitable sample is fairly trivial: a discarded diner coffee cup or hair left in a comb. If the genomic profile pointed to a predisposition to serious diseases, such as Parkinson’s, this would be prized ammunition for the campaign.

An alternative approach would be for an independent organization to obtain DNA from the candidates and then to provide reports to the public. This would allow the electorate to evaluate if the candidates’ genetic profiles were in any way relevant. Extreme perhaps, but this would acknowledge the inevitability of political genetics and would prevent campaigns from only releasing a partial or biased genetic profile.

Privacy or Responsibility  

Should genetic profiling of political candidates be allowed or even required? Some argue that a person’s genetic information is private and not for public dissemination. Everyone has quirks in their genome they would not necessarily want shared with others. Additionally, a person’s genetics are (for now) completely beyond their control. This falls in line with the 2008 Genetic Information Nondiscrimination Act(GINA), which prohibits employers and health insurance companies from discriminating against people based upon their genetics.

But those in favor of releasing genetic information for candidates view it as an issue of disclosure just as candidates disclose (some) information about their health and finances. Does the public have a right to know if the future President is predisposed to a debilitating genetic disease? Had voters known that President Reagan was likely to get Alzheimer’s while in office, this would surely have affected their voting. This viewpoint was summarized by the Harvard geneticist George Church in the Wall Street Journal: "I would be shocked if Americans and people in other countries don't want this type of data [about political candidates]. 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." 

The legality of testing someone’s DNA without consent has not been clearly determined. There are privacy laws that might be construed to cover genetic material, but these laws were written long before genome sequencing became a reality. Daniel Vorhaus, an expert on genetics law, discussed the issues on the Genomics Law Report blog. After analyzing the federal and state laws that might govern the issue, he concludes: “There exists a wide range of scenarios where surreptitious genetic testing, should it occur, would fall squarely within a legal gray area.”

Of course, any potential intrusion into the genetic privacy of a political candidate would likely spur extreme anger from that candidate’s campaign and provoke a full slate of legal and other recriminations. Unapproved publication of the genetic profile of a sitting president would surely unleash a multitude of national security laws.

While the technology exists today for political genomics, there have still not been any reported cases of offensive or defensive genetic testing in the United States. Perhaps candidates are scared of opening a Pandora’s box. They have as much if not more hidden in their genome as in the genome of their opponent. Even so, we are probably moving towards an era where politicians will come under increasing pressure to disclose their genome. American society is moving towards knowing as much as possible about our presidential candidates and their genome is an important piece of knowledge. 

 

OCT
10
I-Study: Genomic Interpretation - Who Will Pay?
During this webinar, members of the study review team present preliminary findings of the I-Study, conducted at the Harvard Medical School's 2011 Personalized Medicine Conference.
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