Your genes determine who you are, how you will live, and in some cases how you will die. NBC’s Peter Alexander has found that new advances in testing are unlocking a lot of secrets.
This is one example where even a low "one- star" ratings score is deceptively high. This story was lacking in many significant ways:
"Consider Anne Wojcicki, the 33-year-old former health care investment analyst who this month married a handsome young computer scientist, who just happens to be one of America’s richest men.
As if the swirl of excitement around the Silicon Valley pairing of Ms. Wojcicki and Sergey Brin, a co-founder of Google, were not enough, Ms. Wojcicki has captured still more attention with a biotech company she recently co-founded, 23andMe. And her husband’s company is an investor.
Google disclosed last week in a regulatory filing that it has invested $3.9 million in 23andMe."
Who put that Google idea in the reporter’s head? And once used in the story, why wasn’t there full disclosure?
News? Or advertising? If the former, it failed badly. If the latter, it was a steal – free, long, and unchallenged on network TV.
We don’t like using harsh terms in our reviews. We try to be constructive. At times like this it feels impossible.
The story explained "For a thousand dollars, customers get a scan of their DNA." The story did not, however, discuss whether any insurer would cover the cost. We think that it is important to include this information. Giving cost info without insurability info is almost useless unless one is catering only to an independently wealthy audience.
While the story provided examples of individuals who were ‘relieved’ to learn that their genetics suggested their risk of something was not elevated, the company’s consent form does a better job of helping consumers understand that the limited (questionable?) benefit from the information provided at this time and warns that the information should not be the basis on which any changes are made to health behaviors.
The harms of such testing were given short shrift. When the company founders were asked whether insurance companies could use the information generated against a person, their response was that they "did not believe so". However, the company’s consent form cautions that this is a real risk. It states: "If an employer or insurance company obtained your genetic information through your sharing of it or by legally binding requirements, they could use your genetic data to deny you employment or coverage."
Clearly the focus was on the ‘fun’ genetics of traits such as eye color, or the nice feeling upon learning that one’s risk of a specific cancer was not elevated. Although a question about what to do about less cheery information was raised, it was not answered in any depth. This is an important area of concern that should be explored in a news story about comprehensive genetic analysis.
When one of the founders of the company was asked on-air about the accuracy of the information generated, her response was that the reason for starting the company now was that "the data has become so incredibly accurate". She further elaborated that the results from the company they contract with to run the analysis is "amazingly accurate". It is reassuring that the company founder has strong beliefs about this; however her faith is in contradiction with the consent one must agree to before ordering the analysis kit which actually provides estimates of error. So rather than describing the accuracy with adjectives, there are actual numbers that were available to provide more complete information.
This piece frames risk factors or even normal human variations as diseases. Are we now supposed to be worried about being slow caffeine metabolizers? Wet ear wax makers? Bitter taste perceivers? More time was spent on these topics than on cancer or diabetes.
There is a great bioethical dilemma about the utility of tests for something for which there is no preventive meausure or unsure course of treatment. As an example this story mentions that the test can inform you about your risk of developing multiple sclerosis. But, while once raising the question overall about what one would do with the DNA information, it failed to specifically address the quandry of the example it raised with MS.
It is ironic and almost laughable that so much of the airtime was spent discussing the test’s ability to determine traits (e.g., blue eyes, ear wax consistency, how brussels sprouts taste) which you don’t even need a DNA test to determine.
The story had interview material with the company’s founders and with two consumers (one of whom was the reporter himself – yikes!) of the company’s services. Although a partial comment from a genetic counselor was included, it was inadequate to provide a balanced view of how the information from this service can be used.
At the very beginning, it was mentioned that there are several commercial entities that will analyze a consumer’s DNA. There was not any discussion about the relative merits of one over another nor any time spent discussing the different utility of genetic diagnosis and genetic screening.
For balance, it would have been interesting to interview someone who has decided to forgo analysis of their genotype.
This piece talked about commercially available DNA analyses. It failed to explicitly mention that the costs are not covered by insurance – which clearly impacts how truly available they are .
It was clear that comprehensive genetic testing is an evolving area. Nonethless, what it made newsworthy – and worthy of such a long segment – right now was not clear.
We can’t be sure if the story relied soley or largely on a news release. We do know that only one source apparently not connected with the company was interviewed – and her quote was for about 20 words.