First I want tell everyone how absolutely amazed I am by Misha Angrist. I don't know if you know who he is. But I now tell you that you must. He is one of the PGP 10. I know, it sounds alot like the Oceanic Six...but seriously Misha is way better looking than Jack!
In this article we argue that the reality of the new genetics and genomics urges us to abandon the traditional concept of medical confidentiality.
Open consent as part of the Personal Genome Project implies that research participants accept that:
• Their data could be included in an open-access public database.
• No guarantees are given regarding anonymity, privacy and confidentiality.
• Participation involves a certain risk of harm to themselves and their relatives.
• Participation does not benefit the participants in any tangible way.
• Compliance with monitoring of their well-being through quarterly questionnaires is required.
• Withdrawal from the study is possible at any time.
• Complete removal of data that have been available in the public domain may not be possible.
The moral goal of open consent is to obtain valid consent by effectuating veracity as a precondition for valid consent and effectuating voluntariness through strict eligibility criteria, as a precondition for substantial informed consent.