As knowledge grows regarding the genetic bases of psychiatric disorders, a variety of ethical issues will need to be confronted. Current evidence suggests that the etiology of most psychiatric disorders rests on a combination of multiple genes and environmental factors. As tests for the genes involved become more easily available, pressures will arise to use them for prenatal testing, screening of children and adults, selection of potential adoptees, and pre-marital screening. Common problems that will need to be addressed include popular misunderstanding of the consequences of possessing an affected allele, impact of knowledge of one's genetic make-up on one's sense of self, and the discriminatory use of genetic information to deny persons access to insurance and employment. Although most states have some legislation aimed at preventing discrimination, the laws' coverage is spotty and federal rules are lacking. Physicians may find that newly available genetic information creates new duties for them, including warning third parties who may share the patient's genetic endowment. And genetics research itself has raised questions about when to disclose information to subjects and their family members about the genes that are being studied, and how to define the subjects of the research when information is collected about family members other than the proband. Knowledge of these dilemmas is a first step to resolving them, something that the medical profession will need to attend to in the near-term. Neglect will lead others to set the rules that will control medical practice, including the practice of psychiatry, in the new world of genetic medicine.
"Similarly, for Blacks, and to a lesser extent Hispanics, many of these concerns evoke images of a kind of science that is rooted in eugenics, and hail back to historical research projects that used questionable methodologies – the result of which rationalized the division of society by race, and ethnicity, creating further health disparities (Jackson, 1999; Ossario and Duster, 2005; Shields et al., 2005) and engendering a perception of genetic research as being harmful to society (Jackson, 1999; Furr, 2002). With psychiatric disorders, genetic findings still may be perceived as tentative at best (Biesecker and Peay, 2003; Appelbaum, 2004). Therefore, potential research participants may be wary of participating in an exploratory genetic study with questionable benefit and possibly undesirable outcomes. "
[Show abstract][Hide abstract] ABSTRACT: The National Institute of Mental Health's effort to rectify the underrepresentation of American Blacks in the genetic studies of psychiatric disorders has met with mixed success. This study was designed to understand some of the barriers to recruitment.
Men and women, who were of Black, White or Hispanic race/ethnicity, aged 18-79 years (N= 353), were recruited from clinical and community settings in New York City. Participants responded to a survey that was designed to measure willingness to participate and attitudes toward genetic research. Principal components analyses generated eight factors including perceived benefits, concerns about, and drawbacks of genetic research, and beliefs about genetic or environmental contributions to psychopathology. Analysis of variance assessed within-ethnic group differences on factor scores, as they related to willingness to participate in genetic research.
Ethnic groups did not differ significantly in stated willingness to participate in genetic research; more than 70% in each group were willing to participate. Among Blacks and Hispanics, mistrust and wariness, and stigma were significantly increased in those unwilling to participate; for Whites, perceived benefit to society and perceived importance for knowledge/education were associated with willingness to participate. For Blacks and Hispanics, youth (aged 18-29 years) and college education reduced, but did not eliminate the association between wariness and mistrust and willingness to participate.
Findings suggest that recruitment efforts aimed at increasing the representation of Blacks should be aware of the barriers among those who are less educated, and involve interactive community collaborations, to fully address the mistrust in this population.
[Show abstract][Hide abstract] ABSTRACT: This qualitative research examined the ethical concerns regarding the psychosocial issues, research design and implementation, and application of psychiatric genetic research on substance use disorders (SUD) from multiple perspectives.
A literature review of the bioethics literature related to psychiatric genetics and focus groups explored the ethical implications of SUD genetic research. Twenty-six National Institute on Drug Abuse funded principal investigators in the field of psychiatric genetic research, nine adolescent patients in residential SUD treatment, and 10 relatives of patients participated in focus groups (held separately). The focus groups were recorded, transcribed, and the content was analyzed. The themes that emerged from the literature and the focus group transcripts were organized by using NVIVO7, a software package designed to manage, analyze, and compare narrative data.
Investigators and the literature expressed similar concerns regarding the ethical concerns associated with psychiatric genetic research including violation of privacy, misunderstanding about psychiatric genetics, stigmatization, commercialization, discrimination, eugenics, consequences of research on illegal behavior, unforeseen consequences, altered notion of individual responsibility, and others. Patients and their relatives showed little familiarity with the ethical issues as identified by professionals and little concern regarding most of the potential risks. The exception was apprehension associated with potential criminal justice uses of stored genetic information, in particular enforced therapy and stigmatization, which elicited some concern from all perspectives.
The challenge for further research is to identify risks and benefits of SUD research that are germane in a behaviorally disinhibited population and devise effective tools to communicate information to participants through an improved informed consent process.
"It is likely that psychiatric genetic research will increase exponentially in future decades, as more sophisticated molecular research techniques are used to discover the underlying pathways to common mental illnesses, such as major depression (Appelbaum, 2004). "
[Show abstract][Hide abstract] ABSTRACT: With increasing emphasis on understanding genetic contribution to disease, inclusion of all racial and ethnic groups in molecular genetic research is necessary to ensure parity in distribution of research benefits. Blacks are underrepresented in large-scale genetic studies of psychiatric disorders. In an effort to understand the reasons for the underrepresentation, this study explored black participants' attitudes towards genetic research of psychiatric disorders. Twenty-six adults, the majority of whom were black (n = 18) were recruited from a New York City community to participate in six 90-minute focus groups. This paper reports findings about respondents' understanding of genetics and genetic research, and opinions about psychiatric genetic research. Primary themes revealed participants' perceived lack of knowledge about genetics, concerns about potentially harmful study procedures, and confidentiality surrounding mental illness in families. Participation incentives included provision of treatment or related service, monetary compensation, and reporting of results to participants. These findings suggest that recruitment of subjects into genetic studies should directly address procedures, privacy, benefits and follow-up with results. Further, there is critical need to engage communities with education about genetics and mental illness, and provide opportunities for continued discussion about concerns related to genetic research.
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