Ethical recommendations: Whole genome sequencing and privacy

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As we have discussed in recent blog posts, whole genome sequencing is sure to be an imminent component of future health care, yet measures need to be taken to assure personal privacy of genetic data.

In October 2012, the Presidential Commission for the Study of Bioethical Issues made twelve recommendations regarding regulation of genetic data related to whole genome sequencing, in a report titled “Privacy and Progress”.

Here’s our recap of the recommendations:

  1. Clear guidelines and policies should be created to protect individuals from being disadvantaged or discriminated against based upon genetic findings. Individuals should also be able to opt for their genetic data to be provided to persons or entities of their choosing.
  2. Federal and state governments should establish baseline laws and regulations that will protect individuals from having their whole genome sequenced without explicit consent.
  3. Providers of whole genome sequencing should adhere to professional ethical guidelines and take measures to avoid the intentional or unintentional misuse genetic data, and should be held accountable to laws and guidelines.
  4. Genetic data should not be able to be re-identified, and should not be made available to law enforcement or defense without consent, except in the case of highly special circumstances.
  5. The most effective methods of ensuring privacy protection should be communicated and shared across the industry.
  6. Ironclad consent practices should be put in place and participants should be informed about who will have access to their genetic information throughout and after the sequencing process.
  7. Consent forms should include a summary of whole genome sequencing services, explain how genetic data will be used, explain how data may be used in the future, explain benefits, risks and unknown risks, and explain what information the individual can expect to receive from his or her genetic data.
  8. Participants should be made aware that additional, unintended findings will likely be found during the whole genome sequencing process.
  9. Guidelines for dealing with incidental findings should be established, and efforts should be made to establish individuals’ preferences for learning about such incidental findings.
  10. Data privacy and protection should be ironclad yet data communication should flow between researchers and healthcare providers to facilitate personalized, genomic medicine.
  11. Policy makers should act to endorse the benefits of whole genome sequencing to encourage the public to participate in genetic research.
  12. Scientific advancements generated from whole genome sequencing should be used to benefit the greatest number of people possible.

You can read the full October 2012 commission report here.

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