There are instances where the provider of an intervention, such as surgery, has failed to obtain necessary informed consent from the recipient of the intervention. Perhaps the surgeon has failed to warn the patient that she may go into a coma, or even be killed, from the surgery. Sometimes, as a result of this intervention, the recipient cannot give informed consent to researchers for the release of their personal data precisely because of the intervention. If they are in a coma, (...) they cannot be reached. Sometimes, this personal data itself can prove that the provider of the intervention failed to obtain informed consent for the intervention. For example, a personal file may include a consent form that does not include warnings about the risk of falling into a coma from the surgery. Paradoxically, those who cannot give informed consent for the disclosure of their personal data on an intervention may have been especially ill-informed about the repercussions of the intervention. In such instances, should researchers ever use the data and disclose the data in their research? In an attempt to demonstrate when this dilemma may be relevant, and how it may be solved, I will present a real-world case of this dilemma in my own empirical research on refugees who agreed to repatriate to their countries of origin from Israel. I will consider what theories on consent, if any, can help us resolve this dilemma. (shrink)

The American Journal of Bioethics, Volume 11, Issue 11, Page 44-45, November 2011.

The American Journal of Bioethics, Volume 12, Issue 1, Page W1-W2, January 2012.

Recruitment challenges in clinical research are widespread, particularly for traditionally under-represented groups. Referral relationships—in which research partners and clinical partners agree to collaborate on selected research studies or programmes, with the expectation that the clinical partners refer appropriate patients as potential participants—may help alleviate these challenges. Referral relationships allow research partners access to expanded and more diverse pools of participants by increasing the engagement of medical providers, leveraging providers’ connections with patients and providing structural support for study participation. Clinical partners (...) can also benefit from the resources offered by research involvement, and patients may benefit from improved access to studies. Yet despite their potential, referral relationships can raise ethical concerns. Here, we discuss ethical considerations for referral relationships in clinical research to address these concerns. When establishing relationships, fair participant selection should guide the sites and studies involved. When defining the terms of a relationship, partners should build trust and respect, collaborating so that health centres or hospitals and communities benefit from their research involvement with the mitigation of associated burdens. When implemented, referral relationships should continue to honour fair participant selection, reduce misunderstanding or miscommunication about research and protect patients’ privacy and confidentiality. Overall, when conducted ethically, referral relationships can help address study recruitment challenges and promote fair access to research opportunities. (shrink)

The American Journal of Bioethics, Volume 11, Issue 11, Page 42-43, November 2011.