Question

For this discussion, we will be focusing specifically on 23andMe. The relevant articles and sites to read are available below. I purposely ordered the references chronologically to show a shift in thinking behind personal genomics and 23andMe.

2010 Who Owns the Data - Please focus on the second page and the brief continuation onto the third page.

SciMag2010 - Who Owns the Data(1).pdf

2013 FDA Warning to 23andMe

http://www.sciencemag.org/news/2013/11/frustrated-us-fda-issues-warning-23andme

2013 23andMe Prohibited from Giving Health Info

http://www.sciencemag.org/news/2013/12/dna-testing-company-wont-offer-health-information-anymore

2015 Can 23andMe have it all?

SciMag2015 - Can 23andME have it all(1).pdf

Please read all four items and discuss the shift in the company's approach to genetic analysis. Please also discuss what you think about personal genomic companies' approaches to research. Feel free to compare 23andMe's polices on research with another company's. Did you think the FDA was right in prohibiting 23andMe from providing health information?

These are some sample talking points to get you thinking about the ethics of genetic research in the context of Big Data. You don't have to answer all of these questions and I highly recommend that you bring up other talking points. For example, the last paper I gave you was from 2015. You could find a more recent paper on 23andMe or look up their more current policies and discuss those.

Answer 1

• In performing genetic research certain ethics have to be followed.
• The researcher must clearly explain the current research programme. he should explain about the sample's use in future prespective research .
• Confidentiality of the research and its findings should be maintained.
• He should also get sufficient permission for publishing the results in public database , which is solely based on the volunteer's sample.
• Here 23and me claims that the company uses its $99 kit to make patients aware of the genetic information and risks and future genetic disorders
• It also claims that it doesnot provide medical services.
• But FDA claims that the company uses the sample and afford medical advices in an illegal manner and also orders the company to stop selling the kit.
• The ethics also claims that if a person or company owns a particular sample he can perform any exclusive work on that .
• So, from this point of view 23and me is correct.
• But if you think in the other way , people just tracking about the health online and start medications based on that leads to serious problems to the society.
• So, FDA's order for stop selling the kit can be supported .