Human Reproduction, Vol. 16, No. 11, 2473,
November 2001
© 2001 European Society of Human Reproduction and Embryology
Letters to the editor |
Adolescent cancer patients: sperm storage, consent and emotion
Center for Nursing Research, School of Nursing University of Alabama at Birmingham, NB 6012 1701 University Boulevard, 1530 3rd Ave. S. AL 35294-1210 USA
Dear Sir,
We read with interest the recent article `Gaining consent to freeze spermatozoa from adolescents with cancer: legal, ethical and practical aspects', (Bahadur et al., 2001). In that paper the authors identified several complex issues that arise when working with adolescents receiving treatment for cancer, specifically those related to the donation of sperm for preservation prior to treatment. Many of the points made by the authors became particularly salient for us as we recently analysed data from an on-going NIH funded study of children, adolescents' and parents' experiences in clinical trials (Broome et al., 1998
). As a part of that project we interviewed two adolescent males post bone marrow transplant about their decision-making related to their entry into a clinical trial. During the interviews both adolescents spontaneously discussed their decisions about another procedure that was related to the clinical trial—that of sperm donation prior to treatment initiation. The adolescents both expressed regret at not having seriously considered the implications of refusal to freeze their sperm (both chose not to). One stated `I think about it more now than I did then . . . that is pretty much the only thing that really bugs me'. Both adolescents talked about repeated efforts on part of the clinician-researchers to explain the implications of cancer treatment and how strongly the physicians encouraged the adolescents to donate spermatozoa for preservation. One male explained, `Actually they were really kind of getting on my nerves (the doctor) . . . he wanted to make sure I thought about it (sperm banking)'.
As noted in your article, it is universally understood that these adolescents need time to consider the circumstances of electing to donate spermatozoa and we too believe the element of time is crucial when allowing these adolescents to make this decision. Yet, it is not only time or cognitive understanding that influences the final decision. In our study, each male retrospectively recognized the clinicians' efforts to explain the importance of sperm banking. These were clearly not cases in which the adolescents were rushed or didn't understand cognitively what they were being asked to do. Interestingly, both adolescents were also encouraged by their parents to consider the idea of sperm banking. Yet, in one case there was also difference in opinion between his parents, with the father supporting his decision not to use the banking option, making the final decision very difficult for the adolescent. Foreman (1999), in his article about family decision-making, suggests that family support is key to assisting children and adolescents to making the best decision for their interests. Had there been a `family rule' consent specific to donation of spermatozoa in this case there may have been a different outcome.
In the analysis of our data it is clear, as also noted by your authors, that emotional factors are highly important in the adolescents' comprehension of medical procedures. We were pleased to see that the concept of emotion as a critical issue to consider, was reflected clearly in the authors' recommendations in the article. However, the role emotional factors play in decision-making did not seem to be as well developed in their procedures related to sperm storage. Rather the emphasis seemed to be on cognitive and structural aspects of the situation. We would recommend developing procedures that would facilitate more of a focus on the adolescents' feelings about their situation and the embarrassing nature of what he will be required to do. Many of the procedural aspects in this paper are well detailed and sorely needed, yet it is only by balancing adolescents' need for understanding about the procedures, purpose, etc. with their ability to work through their emotional responses that there can be a decision that is acceptable to the adolescent long-term. We appreciate the authors' willingness to address this difficult but very important aspect of care.
References
Bahadur, G., Whelan, J., Ralph, D. and Hindmarsh, P. (2001) Gaining consent to freeze spermatozoa from adolescents with cancer: legal, ethical and practical aspects. Hum. Reprod., 16, 188–193.
Broome, M., Hall, J., Liaschenko, J. et al. (1998) Ill children and their parents: Experiences with research. National Institutes of Health, Bethesda, MD, USA (1998–2001).
Foreman, D.M. (1999) The family rule: a framework for obtaining ethical consent for medical interventions from children. Med. Ethics, 25, 491–496.
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