“Open consent as part of the Personal Genome Project implies that research participants
• 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.”
While it is commendable to be this honest, one must wonder what it will do to participation recruitment. I have knowledge in the field and I have a fundamentally positive attitude towards these research projects, but even I would think twice before accepting this, what then will the layman do ?
I cannot help but wishing strongly for this approach to work though. If this is the consent for the future then the world is better off than I thought, – and that is most definitely a good thing.