An exploration of attitudes among black Americans towards psychiatric genetic research.
paper
Cited
Public
- Authors
- Murphy, Eleanor; Thompson, Azure
- Year
- 2009
- Journal
- Psychiatry
- PMID
- 19614555
- DOI
- 10.1521/psyc.2009.72.2.177
- PMCID
- PMC3149821
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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| # | Section | Preview |
|---|---|---|
| 20 | RESULTS — Demographic Characteristics of Participants | The 26 focus group participants ranged in age from 22 to 65 years, with a median age of 42. The… |
| 21 | RESULTS — Demographic Characteristics of Participants — Response themes | The total number of coded responses within a topic area, along with the proportion of response… |
| 22 | RESULTS — Demographic Characteristics of Participants — Beliefs about the causes of psychiatric disorders | When asked about their beliefs about causes of psychiatric disorders, participants provided a wide… |
| 23 | RESULTS — Demographic Characteristics of Participants — Beliefs about the causes of psychiatric disorders | “I feel that many people get stressed out, whether from work, working long hours or people have… |
| 24 | RESULTS — Demographic Characteristics of Participants — Beliefs about the causes of psychiatric disorders | The next common theme was family/ childhood upbringing, such as learned behavior, relationships… |
| 25 | RESULTS — Demographic Characteristics of Participants — Beliefs about the causes of psychiatric disorders | Lifestyle-related personal habits, such as exercise, diet, and substance use, accounted for 13% of… |
| 26 | RESULTS — Demographic Characteristics of Participants — Understanding of genetics | Respondents most commonly described their substantive interpretation of the term “genetics” by… |
| 27 | RESULTS — Demographic Characteristics of Participants — Understanding of genetics | The next common response was having a superficial knowledge of some of the terminology associated… |
| 28 | RESULTS — Demographic Characteristics of Participants — Understanding of genetics | Another respondent felt that minority communities, in particular, were uneducated about genetics.… |
| 29 | RESULTS — Demographic Characteristics of Participants — Understanding of genetics | She further went on to state that the subject of genetics is only taught after secondary school. She… |
| 30 | RESULTS — Demographic Characteristics of Participants — Understanding of genetic research | When asked about genetic research specifically, participants spoke of experimental procedures like… |
| 31 | RESULTS — Demographic Characteristics of Participants — Understanding of genetic research | Another respondent, like many others, highlighted the conflict she faced, in trying to balance her… |
| 32 | RESULTS — Demographic Characteristics of Participants — Understanding of genetic research | Similarly one respondent expressed the opinion that fear of the unknown can deter people from… |
| 33 | RESULTS — Demographic Characteristics of Participants — Perceived advantages/benefits of genetic research | Despite a perception of being relatively uninformed about genetic research, most people were able to… |
| 34 | RESULTS — Demographic Characteristics of Participants — Perceived advantages/benefits of genetic research | In addition to thinking that genetic research was good for keeping society better informed in… |
| 35 | RESULTS — Demographic Characteristics of Participants — Perceived advantages/benefits of genetic research | Certain group participants highlighted the idea that some of the purported benefits of genetic… |
| 36 | RESULTS — Demographic Characteristics of Participants — Perceived advantages/benefits of genetic research | When asked by the moderator whether this issue was a drawback or an advantage, the same respondent… |
| 37 | RESULTS — Demographic Characteristics of Participants — Perceived advantages/benefits of genetic research | Another respondent in different group voiced a similar concern—that knowing about someone’s… |
| 38 | RESULTS — Demographic Characteristics of Participants — Perceived drawbacks and barriers to participating in genetic research | The two most prevalent response themes in this area involved unpleasant study procedures—drawing… |
| 39 | RESULTS — Demographic Characteristics of Participants — Perceived drawbacks and barriers to participating in genetic research | Other people described less extreme, but more probable situations. For instance, a woman recounted… |
| Name | Type |
|---|---|
| adoption studies | cohort |
| adverse effects | phenotype |
| African American | cohort |
| alcohol | phenotype |
| anxiety | phenotype |
| attention deficit hyperactivity disorder | phenotype |
| Attitudes towards psychiatric genetic research local | phenotype |
| Black | phenotype |
| Black communities local | cohort |
| black participants | cohort |
| Black researchers local | cohort |
| blacks | cohort |
| Black sample local | cohort |
| blood | drug |
| Blood drawing local | other |
| cancer | phenotype |
| cardiovascular disease | phenotype |
| cash incentives local | drug |
| Causes of Psychiatric Disorders local | phenotype |
| cigarettes | phenotype |
| college students | cohort |
| community residents | cohort |
| Confidentiality concerns local | phenotype |
| delusions | phenotype |
| depression | phenotype |
| DNA | drug |
| drugs | drug |
| English-speaking adults local | cohort |
| environment local | phenotype |
| exploitation local | phenotype |
| families | cohort |
| family members | cohort |
| Fear of research local | phenotype |
| fear of the unknown local | phenotype |
| Focus group participants local | cohort |
| Focus groups local | cohort |
| foreign drugs local | drug |
| general population | cohort |
| general stressful life events local | drug |
| genetic linkage studies local | cohort |
| genetic material local | drug |
| genetic predisposition local | variant |
| genetic research local | phenotype |
| Genetic studies | cohort |
| hallucinations | phenotype |
| health issues | phenotype |
| healthy controls | cohort |
| Helix local | drug |
| human behavior | phenotype |
| kids | phenotype |
| Lobotomy local | phenotype |
| long hours local | phenotype |
| major depressive disorder | phenotype |
| major psychiatric illness | phenotype |
| mania | phenotype |
| medication | drug |
| mental health professionals local | cohort |
| Mental health treatment local | phenotype |
| methylphenidate | drug |
| minority communities local | cohort |
| Minority Communities local | cohort |
| money problems local | phenotype |
| mood disorders | phenotype |
| mutations local | drug |
| negative effects of smoking local | phenotype |
| nicotine | drug |
| Non-Hispanic black | cohort |
| non-Hispanic Black/African American local | cohort |
| Non-Hispanic Blacks local | cohort |
| non-Hispanic White/Caucasian local | cohort |
| non-Hispanic whites | cohort |
| offspring | cohort |
| other minorities local | cohort |
| panic disorder | phenotype |
| paranoia | phenotype |
| participants | cohort |
| participants without reported history of mental illness local | cohort |
| participants with reported history of mental illness local | cohort |
| physical disorders local | phenotype |
| potential participants of genetic research local | cohort |
| primary care practitioners local | cohort |
| psychiatric disorders | phenotype |
| psychosis | phenotype |
| race/ethnicity | phenotype |
| Racial mistrust local | phenotype |
| relationships | phenotype |
| research participants | cohort |
| RNA | drug |
| secondary school local | cohort |
| serious physical illness | phenotype |
| Sexual aggression local | phenotype |
| social phobia | phenotype |
| stigma | phenotype |
| stress | phenotype |
| substance abuse | phenotype |
| suicide | phenotype |
| treatment-seeking patterns local | phenotype |
| Tuskegee Syphilis Study local | cohort |
| Twin cohort | cohort |
| Understanding of Genetic Research local | phenotype |
| Understanding of Genetics local | phenotype |
| unknown substances local | drug |
| Unnamed drug (numeric) local | drug |
| U.S.-based family history studies local | cohort |
| violent behavior | phenotype |
| violent gene local | gene |
| volunteers | cohort |
| White | phenotype |
| white participants | cohort |
| White researchers local | cohort |
| whites | cohort |
| Willingness to participate in genetic studies local | phenotype |
| work | phenotype |
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