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)

Gender-affirming hormone therapy is increasingly available to support healthy development of transgender youth, but ethical concerns have been raised regarding fertility-related implications. In this article, I present data from an exploratory qualitative study of the decision-making experiences of trans youth, parents of trans youth, and healthcare providers serving trans youth related to fertility and family creation. I discuss how cisnormative and bionormative biases can impact care and contribute to ethically problematic narratives of regret. Finally, I offer recommendations to support ethically (...) sound, gender-affirmative fertility and family creation counseling with transgender youth. (shrink)

This article develops a model of informed consent for fresh oöcyte donation for stem cell research, during in vitro fertilisation (IVF), by building on the importance of patients’ embodied experience. Informed consent typically focuses on the disclosure of material information. Yet this approach does not incorporate the embodied knowledge that patients acquire through lived experience. Drawing on interview data from 35 patients and health professionals in an IVF clinic in Australia, our study demonstrates the uncertainty of IVF treatment, and the (...) tendency for patients to overestimate their chances of success prior to the experience of treatment. Once in active treatment, however, patients identify their oöcytes as both precious and precarious. We argue that it is necessary to formally include embodied experience as a source of knowledge in informed consent procedures, both for gratuitous donation and for egg-sharing regimes. We recommend that at least one full cycle of IVF be completed before approaching women to divert eggs away from their own fertility treatment. (shrink)