Guest Post by Alana Rose Cattapan
As Michael Dunn writes in a recent editorial for the JME, “no medical ethicist worth their salt would deny that consent is a foundational concept in contemporary medical ethics,” and it is an extraordinary understatement to say that much ink has been spilled on the topic. The spaces between consent in theory and in practice is the subject of Dunn’s editorial, where he describes the ways that scholarship about consent fails, at times, to account for the messiness of the real-life process.
Obtaining consent for egg donation is a particularly messy endeavour. We still know relatively little about the long term effects of egg donation, and donors are sometimes seen as secondary players while the recipient of the eggs – the woman carrying a pregnancy and having a child – is viewed as the primary patient. Like other corporeal donations – blood, organ, bone marrow – egg donation presents a curious case of medical treatment in which there are no physiological benefits to the donor. However, in the case of egg donation, the intervention occurs not to save a life, but rather to fulfil someone else’s desire to have a child.
In Canada, where laws prohibit payment and a grey market in paid donors has emerged, the complexities of obtaining informed consent for egg donation are particularly fraught. Donors that receive payment (are they really donors if they are paid?) have to navigate a system where they are seemingly engaged in something illegal and they may not feel empowered to demand the kind of treatment (including follow-up care) to which they are entitled.
Egg donation, then, must be held to a higher standard of consent than other forms of medical treatment, a position also endorsed by a range of experts including the Canadian Fertility and Andrology Society, and the Society of Obstetricians and Gynaecologists of Canada. In 1999, these organizations issued an ethics statement stating explicitly that given the sensitive nature of egg donation, “obtaining voluntary, uncoerced and informed, written consent is crucial to the clinical acceptability of oocyte transfer between women.”
My study of consent forms for egg donation in Canada, published in the JME, reveals some of the curiosities of obtaining consent in this strange in-between place of medicine and reproduction. In studying the consent forms that some clinics in Canada made available to me, I found that the risks of the procedure are usually, but not always, disclosed; that there is a lack of clarity about anonymity and privacy; and that some forms read more like a legal contract than a document procuring consent to medical treatment. Absent detailed information about certain aspects of donation, it’s not entirely clear if egg donors are understood as patients in their own right, or, as legal scholar Vanessa Gruben has stated, as “spare parts.”
The consent forms I studied can’t really tell us anything about the specific ways in which consent for egg donation is or is not occurring. Consent is an extensive process that involves much more than what is contained in a consent form, and even if consent forms were the only aspects of the process, there is a lot of literature on the difficulties presented by consent forms that contain too much information, are too long, and are too difficult to read.
At the same time, the consent forms I studied revealed that clinics can be doing a better job when it comes to egg donation. Some of the forms contained all but one of the elements I identified as integral to obtaining informed consent, and did a good job of providing clear, concise, and readable forms that would ensure that decision making about whether or not to participate in egg donation was relatively informed. With some small changes, several of these consent forms would be doing an excellent job.
In his book When Breath Becomes Air, neurosurgeon and writer Paul Kalanithi explains why so few doctors donate their bodies to medical schools for dissection. He writes, “as one anatomy professor put it to me, ‘you wouldn’t tell a patient the gory details of a surgery if that would make them not consent.’” But egg donors are not cadavers, nor are they conventional surgical patients. When engaging in an intervention is all risk with no clear physiological reward, the standard for consent must be higher, the gory details revealed. Given all that we know about informed consent, surely we can do better for egg donors. My paper in the JME this month offers some insights as to how this might occur.
Read the full paper here.