The purpose of this project is to contribute empirical data concerning the values, beliefs, and experiences of persons (or family members of persons) with genetic conditions regarding informational privacy and access to health insurance in the context of health care reform. These data then will be analyzed for their normative and legal implications for public policy. Using a cross-sectional design, data will be obtained by personal interviews with 450 persons affected by genetic conditions or their family members.
Stigma and discrimination are recognized as potentially important social consequences of advances in genetic information. This broadly conceived study of stigma will focus on public attitudes, behavioral intentions and policy orientations. Specifically, the study will examine the impact of perceived genetic etiology on orientations toward individuals and families affected by mental illnesses.
The Human Genome Project (HGP) is a source of hope and a cause for concern for people with disabilities and their families. Few researchers have solicited the input of the disability community about the HGP or reviewed possible responses to their concerns and expectations. In particular, little is known about the 'grassroots' disability perspectives and, within the grassroots perspective, the views of underrepresented subgroups including women, minorities, and low-income families.
One of the projected health dividends of the Human Genome Project is the use of personalized multi-gene testing to identify individual susceptibilities, so that individuals can undertake preventive courses of action. Among other things, for this to be successful medical personnel must be able to convey this information without creating fatalism and in ways that are comprehensible and believable to lay people.
Psychiatric genetic research (PGR) holds great promise for preventing, understanding, and treating neuropsychiatric disorders - a source of immense societal burden and personal suffering. Such research poses many ethical challenges, and failure to perform systematic study of the ethical issues surrounding PGR may threaten societal acceptance of this important scientific work. To date, NIH has not funded any work on PGR that focuses on collecting empirical data about ethical issues.
Research on the genetics of Psychiatric, Neurologic, and Behavioral (PNB) phenotypes reveals a panorama of complexity that creates several challenges: 1) the data are difficult for clinicians to assimilate and integrate into their practices, and even more so for patients and other members of society to understand and use; 2) because the traits investigated by PNB geneticists often have significance for our self-perceptions, new data can challenge our self-images in fundamental ways.
This application proposes the establishment of a Center for Research on the Ethical, Legal and Social Implications of Psychiatric, Neurologic and Behavioral (PNB) Genetics at Columbia University Medical Center (CUMC). Since April 2010, we have been funded under a P20 Developing Center grant to create the infrastructure and begin development of such a Center.
As clinical neuroscience rapidly progresses, mental disorders are increasingly explained in terms of biological mechanisms (e.g., depression is caused by chemical imbalances). The proposed project will examine (i) whether laypeople and practicing clinicians are open to such biological explanations, (ii) how biological explanations impact opinions about mental disorders among clinicians and those who display symptoms, and (iii) how negative effects of biological accounts can be reduced.
This application proposes the continuation of a Center for Research on the Ethical, Legal & Social Implications of Psychiatric, Neurologic & Behavioral (PNB) Genetics at Columbia University Medical Center (CUMC), in collaboration with The Hastings Center. We have been funded since April 2010, initially under a developing center award and since 2013 as a full Center of Excellence in ELSI Research (CEER).
This project employs a multi-method, transdisciplinary approach that combines ethnographic participant- observation, interview research methods, ethical, legal, and public policy analyses. The two goals of the present project are 1) to identify the ethical, legal, and policy challenges that the field of psychiatric genomics will face when trying to translate the findings of large-scale GWAS into clinically useful information, and 2) to make evidence-based recommendations about how to address these challenges.