By Sapna Mehta, Dennis John Kuo.
Teenagers, and indeed all children to various extents, live in a world that does not recognize their independence fully. In various situations, they find their rights being exercised by and interests being defined by parents as well as other authorities such as physicians, teachers and the state to a lesser extent. With the advent of widely available genomics studies, the ability to pry deeper into our genomes to forecast our futures becomes greater. But who has the right to that information? In our article “To Test or Not to Test: Genetic Cancer Predisposition Testing in Pediatric Cancer Patients” we explore the issue from the point of view of a hypothetical teenage patient with acute lymphoblastic leukaemia (ALL) who faces the decision of being tested for an inheritable cancer predisposition syndrome.
The ethical dilemma presents itself when her healthcare providers identify that she is at risk for a genetic cancer predisposition syndrome called Li-Fraumeni Syndrome (LFS). They recommend genetic testing, as her underlying diagnosis of pre-B ALL with low hypodiploidy of 38 chromosomes indicates a high risk that she carries a TP53 mutation in her germline. TP53 mutations are diagnostic of LFS, predisposing the individual diagnosed to a higher risk of developing cancers from early childhood through adulthood. Knowledge of her status could potentially impact her treatment planning and post-treatment surveillance. However, she feels unable to handle any more information.
The patient and her family are faced with the difficult decision to test or not to test, but cannot come to a unified answer. The competing principles of doing what is best for her survival from cancer and her other family members’ health interests, and respecting her autonomy and desire for an open future, collide irreconcilably over her decision. Simply falling back on the four principles of beneficence, non-maleficence, autonomy and justice from Beauchamp and Childress fails to resolve the impasse.
Evaluating this hypothetical case study can help us understand, as medical professionals, what is the best course of action in this complex ethical dilemma. This case example is addressed with an ethical analysis prioritizing the long-term best interests for the patient and examining virtue ethics as an avenue to overcome the ethical stalemate in which the family and patient find themselves. Virtue ethics requires comprehensive evaluation to consider the best characters of the individuals involved: the patient, parents, and healthcare providers. This analysis can identify and motivate the ideal actions of all the stakeholders towards the goal of eudaimonia, human flourishing reliably sought out, for the patient. Particularly in paediatrics, where growth and development are the norm and the goal, encouraging the young patient to understand her condition, to exercise her voice, and to develop forward-thinking critical problem-solving skills while working through her psychosocial challenges in a healthy, informed manner, are important goals. As she participates in life-giving decisions, she grows in the maturity, wisdom and autonomy that consistently direct her towards greater health and well-being.
This case discussion has been inspired by our research project on cancer predispositions syndromes, my practice as an oncologist, and my work on the hospital bioethics committee, where these types of situations are not uncommon. In many ethical impasses, the solution is rarely discovered by insisting that either beneficence or autonomy is more important. Rather, the unique best solution emerges in each situation when the patient, parents and medical professionals all maturely actualize the roles they can play so as to bring about the best outcome for the patient.
Authors: Sapna Mehta and Dennis John Kuo
Global Health, Biology, University of California San Diego, La Jolla, California, USA
Pediatric Hematology–Oncology, University of California San Diego School of Medicine, La Jolla, California, USA.
Competing interests: None declared.