Article Title: The right to know, or not know, the data from medical research

Article Summary

This article discusses the ethical dilemmas that come with the right not to know. Iceland’s genetic research offers a unique perspective into this matter, as it doesn’t allow researchers to disclose any abnormal findings to the donors should the donors choose to not know about it. It puts the researchers having the burden of this knowledge in a tight spot as they have to remain silent when speaking could substantially help patients or study participants. The author thinks that reality of the ‘right’ thing to do about these competing rights to know and not know – and to tell what you do know – varies depending on who’s guiding the discussion. A solution to this is if the person who provides the sample opts for the right not to know, the door to change their mind should stay open in case someday they feel more ready to know. He says that policymakers should also understand the ache of the provider who knows what the patient doesn’t, and can’t reveal it and therefore should be granted the opportunity to consent to non disclosure before they get involved.