Anorexia Nervosa (AN) is a severe, debilitating disorder with a high mortality rate. Research indicates that genetics plays a significant role in AN manifestation and persistence. Genetic testing has the potential to transform how AN is treated, however, in clinical practice, care must be taken to consider the ethical complexities involved. Our objective was to perform an ethical analysis of genetic testing in AN.
We applied the principlist approach, taking into consideration the stakeholders involved and the core ethical principles of autonomy, beneficence, non-maleficence, and justice to (1) evaluate the possible ethical implications of the use of genetic testing in the treatment of patients with AN, and (2) assess whether such testing is justified and if so, under what conditions.
Potential benefits of genetic testing identified include reduction of misdiagnosis and identification of treatable concurrent genetic conditions. The identified potential risks of genetic testing for possible AN-associated risk variants outside of a research setting, especially without more effective treatment options, include a false sense of reassurance for those testing negative and a reduced emphasis on the importance of behavioral-based therapies that may be of benefit.
Genetic testing for complex disorders, including AN, has tremendous potential, but is still primarily research-based. Currently, for those presenting with atypical AN, and severe and enduring AN who, by definition, have not benefited from traditional treatment, genetic testing to rule out or identify other genetic conditions could be of benefit.