Ethical Challenges In Psychiatric Genomic Medicine

Overall Abstract As genomic technologies are used increasingly in psychiatric research, and make inroads into clinical care for certain psychiatric disorders (e.g., autism), psychiatrists are pondering the ethical issues that will arise with greater availability of genomic data. This symposium considers the spectrum of issues, ranging from consent for genome sequencing (GS) to minors’ roles in deciding on genomic testing, to discriminatory requirements that may inhibit psychiatric genetic research, to privacy concerns raised by mobile technologies for transmitting genomic data. Concerns about these issues are heightened by the cognitive and emotional impairments, and by the societal stigmatization, of many psychiatric disorders. Based on surveys of genomic researchers, Dr. Appelbaum will consider consent for GS. A majority of researchers endorse disclosure of a large amount of information, but are willing to devote limited time to the process. That suggests a need for innovative consent models, but despite their liabilities, traditional approaches to consent are currently seen as most viable. However, there is considerable interest in developing staged consent. This presentation will review challenges to obtaining consent for GS; data on researchers’, clinicians’, and patients’ preferences for information; and potential approaches to meaningful choices for participants and patients about GS and return of results. Dr. Sabatello will consider adolescents’ roles in decisions about GS. Minors may be a particular target of genomic testing for psychiatric disorders, because many psychiatric conditions begin before adulthood and parents want to know their children’s genetic make-up. How should we balance parents’ informational interests and minors’ right (not) to know? What should the response be to genetic results indicating predispositions to psychiatric conditions? Who should decide? These issues are complicated by adolescents’ individuation from their families, along with impulsivity, risk-taking, and susceptibility to peer pressure. This presentation will review existing studies, consider ethical and social challenges, and identify areas for future research. Dr. Mascalzoni will review discrimination against psychiatric patients in biobank-based, genomic research. A desire to protect vulnerable subjects often leads to restrictions on recruitment of psychiatric patients or expensive screening and follow-up procedures. As a result, biobanks may fail to contain samples from persons suffering from psychiatric disorders. From a desire to protect the vulnerable, we risk creating a situation where they are twice discriminated against: non-inclusion to protect them from the risks of research leads to biased results, which could lead to a lower standard of care in the future. Finally, Dr. Greenbaum will address privacy issues related to mobile medical applications (MMAs) for genomic information. MMAs offer diagnoses of psychiatric disorders based on phenotypic information and family histories, and are used for deciphering genomic information as well, through increasingly popular DNA apps. In addition to concerns about unfiltered diagnoses and risk estimates of mental disorders, without effective oversight MMAs lack the trustworthiness of other medical devices, and often fail to encrypt data they collect and share with third parties. One approach to this problem is a type of middleware that would prevent MMA genomic data from being shared irresponsibly online.