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From genetic privacy to open consent

In this article, we would like to tell you more about the three different levels of consent we currently support in GeneTalk. We think that a community creates its ethical values when informed individuals debate. Therefore, we would like to invite you to join our discussion!

Personal consent

Concerning your own genetic information, we take a liberal line and think that there is a right to informational self determination. If you consent that the variants that you are uploading to GeneTalk were detected in a sample that originates from your own cells, then you are free to analyze them with all tools available in GeneTalk. You are also allowed to share your genetic information with other GeneTalk users.

Patient consent

In a health-care setting, the moment when a patient decides to seek help means that she is in principle willing to share confidential information. A doctor and his patient have then to define what kind of information is required to answer the patient’s question, what kind of information the patient is willing to share, and who besides the doctor is allowed to analyze the data. The precise answers to these questions depend on the research question posed. GeneTalk requires here the veracity on the part of the researcher: If you have a patient’s consent to analyze the genetic information of a data file in electronic form, you may use all tools of GeneTalk to assist your interpretation. However, GeneTalk will not allow you to share this data with anyone else.

Open consent

The challenge with genetic information is that it is sometimes difficult to separate clinically relevant information from personal information, meaning information that can be used to identify an individual. For a next generation sequencing data set it may therefore be difficult to design a study that states something like “… your data will be anonymized …”. The bioethicist Jeantine Lunshof and the geneticist George Church are proposing an open-consent framework that is trying to enable scientific innovation combined with high ethical standards. For a detailed discussion of their framework we would like to refer to their webpage (http://www.personalgenomes.org/consent/). If you have an open consent for a NGS data set, you are allowed to use all tools provided by GeneTalk and to share the data with all GeneTalk users that will help you to interpret the data.

2 Comments

  1. Thank you for this informative post about open consent and open medical data– #openmeddata.

    A new and developing consent model, Portable Legal Consent, is a commons-based approach to sharing genomic and other health-related information. PLC is slightly different from the public model used by the PGP mentioned above. For more information, please see the Consent to Research website: http://weconsent.us/

    –Thomas

  2. Peter says:

    Has anyone experience with the consent software of:
    http://www.openconsent.org/ in a clinical setting? What about integrating this into the “personal consent” in GeneTalk?

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