You can find her on Twitter as aparnanathan. Really awesome info. I am really amazed to know that they have already tested 5m people?
I would really like to study them more. Data is confidential so there is nothing to be worried about that, but make sure you choose a trusted company. Great points Julian, especially on the privacy bit. After the recent Gedmatch hack,one has to be even more careful with uploading data to third-party sites.
Your email address will not be published. Save my name, email, and website in this browser for the next time I comment. Notify me of follow-up comments by email. Notify me of new posts by email. Currently you have JavaScript disabled. In order to post comments, please make sure JavaScript and Cookies are enabled, and reload the page. Click here for instructions on how to enable JavaScript in your browser. Skip to content by Julian Segert figures by Aparna Nathan In Mountain View, California, near the headquarters of Facebook and Google, lies 23andMe , a company that set out to make genetic testing approachable and affordable for the general public.
How do consumer genetic tests work? What exactly do companies do with your data? Where else can genetic data end up? Figure 1: A hypothetical family tree showing the reach of public genetic databases like GEDmatch. In this example, one of your third cousins, who shares the same great-grandparent as you, posts their test results.
This information makes you identifiable. How effective is de-identification of genetic data? The future of consumer testing A few companies are striving to change the paradigm by giving participants sole ownership of their own data and letting them sell it anonymously, all with the prospect of financial gain.
There are several legal and legislative challenges cropping up to stem the increasing corporate ownership of the building blocks of life. A recent lawsuit brought by the American Civil Liberties Union is challenging patents on two genes that correlate with increased risk for breast and ovarian cancer. Myriad Genetics owns those naturally occurring DNA sequences as well as any natural mutations that may occur in them, some of which they have not even discovered yet!
As a result, many women cannot afford the screenings. The fight against gene patenting is about much more than wonky legal questions — it is about social and environmental justice. Genes and other DNA sequences are facts of nature, common goods that we all share, and should be outside the realm of private ownership.
Patents on DNA sequences decrease access to health care and suppress scientific innovation. Gene patents allow a handful of corporations and private special interests to manipulate the genetic code of life for their own profit, limiting public access to the breakthroughs, tests and treatments that research on our genes makes possible.
To learn more about gene patenting, visit our campaign web page. Kristin E. Shirley S. See also: Sarah N. Boersemail, Johannes J. Knoers, and Annelien L. Sidenotes a The position of the American Society of Human Genetics is that doctors should respect confidentiality and patient wishes by informing patients of genetic risks to family members but leaving it up to them to disclose this information to their relatives. The organization does support exceptions in circumstances where a patient refuses to share information that has the potential to result in significant harm.
There is no definitive estimate of how many biobanks exist or how many samples they hold. A survey of more than biobanks in the U. However, even if a patient indicates to whom they would want their information disclosed after their death, that individual may no longer be alive, their relationship with the patient may have changed, they may not want to know the information, or they may not share it with all affected family members.
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