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May 22, 2013 | Posted By Benita Zahn, MS

In their 2012 article "Preserving the Right to Future Children: An ethical Case Analysis" the authors apply a principalist approach to the ethical analysis of a mother’s decision to allow her 2 year old daughter, Daisy, to undergo OTC to preserve her fertility following stem cell transplant to treat her severe Sickle Cell disease.

While this approach gives one clear parameters to make ethical decisions by identifying issues of autonomy, non-maleficence, beneficence and justice, it does not adequately provide for the contextual issues surrounding such an emotionally charged decision and thus may miss crucial points.  A narrative ethics approach would better identify the contextual issues and create an environment for those issues to be factored into the decision. 

Narrative ethics opens the pages for the story of the person to be told. As it has been said “the devil is in the details”.  Had narrative ethics been applied in this case one might have been able to better learn those details and understand the ‘back story’ of Daisy’s mother. Learning about the family structure and why preserving the child’s fertility is held in high regard would have provided ethicists a more firm foundation to determine beneficence. Without that understanding we are left hoping that the mother is truly acting on with the best interest of her child, not perhaps, some unfinished business in her own life that she hopes to see realized through her child. 

The principalist approach, as the authors write, leaves us with concerns that Daisy may feel compelled, later in her life, to bear children because she was put through the procedure. Lacking a more complete picture of the family she is part of, leaves us to wonder if perhaps, her mother did not live up to some expectation in her family and so would be likely to create in her daughter this sense of obligation. We also don’t know if the mother experienced difficulty in conceiving Daisy and how that could have played a role in her decision making regarding her daughter’s fertility. 

There is also the question of how this procedure was paid for. Is it possible Daisy’s mother was offered a financial incentive if she agreed to allow her daughter to undergo this experimental procedure and if that payment influenced the decision making. Not knowing the family’s financial situation, something narrative ethicist could have learned as part of constructing the family’s story, would be important as the principalist decides non-maleficence.

On the other hand, while narrative provides an opportunity to create a fuller picture of the circumstances leading to important decisions, narrative sans principalism, also falls short. It is one thing to construct a well- rounded understanding of a situation but that must be put into context as well. By applying the principalist’s overlay of autonomy, non-maleficence, beneficence and justice, can one more clearly see the ethical implications of making this decision. Learning a story is but half of the decision making process. One needs the measurements to evaluate the ethical implication. 

Despite this concern, how can one truly evaluate the four cornerstones of principalism without fully knowing the landscape on which those cornerstones are being laid? It would appear the marriage of these two approaches, particularly in thorny issues involving those who cannot speak for themselves, provides the greater beneficence and helps to rule out any maleficence that might be at play, thus insuring autonomy for the subject. 

The Alden March Bioethics Institute offers a Master of Science in Bioethics, a Doctorate of Professional Studies in Bioethics, and Graduate Certificates in Clinical Ethics and Clinical Ethics Consultation. For more information on AMBI's online graduate programs, please visit our website.

0 comments | Topics: Consent, Fertility, Principalism, Reproductive Medicine, Women's Reproductive Rights


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BIOETHICS TODAY is the blog of the Alden March Bioethics Institute, presenting topical and timely commentary on issues, trends, and breaking news in the broad arena of bioethics. BIOETHICS TODAY presents interviews, opinion pieces, and ongoing articles on health care policy, end-of-life decision making, emerging issues in genetics and genomics, procreative liberty and reproductive health, ethics in clinical trials, medicine and the media, distributive justice and health care delivery in developing nations, and the intersection of environmental conservation and bioethics.
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