"What are they going to do with the information?" Latino/Latina and African American perspectives on the Human Genome Project.
paper
Cited
Public
Unavailable
- Authors
- Schulz, Amy; Caldwell, Cleopatra; Foster, Sarah
- Year
- 2003
- Journal
- Health education & behavior : the official publication of the Society for Public Health Education
- PMID
- 12693521
- DOI
- 10.1177/1090198102251026
New developments in genetic science raise questions regarding their application and implications. Dialogue about these questions has not often included the perspectives of the general population and, in particular, the voices of labeled racial or ethnic groups. In this article, the authors present results from an analysis of data from focus group discussions that engaged African Americans and Latinos/Latinas in a discussion of genetic research and technology. In particular, the authors focus on questions of inequality that arose in those focus groups and their implications for public health professionals interested in addressing pervasive racial disparities in health. In addition, they present strategies for achieving a more equitable distribution of risks and benefits from genetic research and technology suggested by participants in these focus groups.
No figures extracted from this document.
No chunks — full text not yet ingested.
No entities extracted from this document yet.
No uploaded files.
Not in any collection.
No citations found.
In this knowledge base
External
| Title | Authors | Journal | Year | Link |
|---|---|---|---|---|
| The ethical challenges of diversifying genomic data: A qualitative evidence synthesis. | Hardcastle F et al. | — | 2024 | → |
| A systematic review of gene-by-intervention studies of alcohol and other substance use. | Neale ZE et al. | — | 2021 | → |
| Ethical concerns around use of artificial intelligence in health care research from the perspective of patients with meningioma, caregivers and health care providers: a qualitative study. | McCradden MD et al. | — | 2020 | → |
| Why African Americans say "No": A Study of Pharmacogenomic Research Participation. | Nooruddin M et al. | — | 2020 | → |
| Consent for Genetic Biobanking in a Diverse Multisite CKD Cohort. | Troost JP et al. | — | 2018 | → |
| Cost and yield considerations when expanding recruitment for genetic studies: the primary open-angle African American glaucoma genetics study. | Salowe R et al. | — | 2017 | → |
| Inclusion of diverse populations in genomic research and health services: Genomix workshop report. | Mathew SS et al. | — | 2017 | → |
| Learning from Latino voices: Focus Groups' Insights on Participation in Genetic Research. | Martinez P et al. | — | 2017 | → |
| Leaves imitate trees: Minnesota Hmong concepts of heredity and applications to genomics research. | Culhane-Pera KA et al. | — | 2017 | → |
| Review: Genetic research on alcohol use outcomes in African American populations: A review of the literature, associated challenges, and implications. | Dick DM et al. | — | 2017 | → |
| Do Public Involvement Activities in Biomedical Research and Innovation Recruit Representatively? A Systematic Qualitative Review. | Lander J et al. | — | 2016 | → |
| Barriers and facilitators to recruitment to a culturally-based dietary intervention among urban Hispanic breast cancer survivors. | Bernard-Davila B et al. | — | 2015 | → |
| Current practice of public involvement activities in biomedical research and innovation: a systematic qualitative review. | Lander J et al. | — | 2014 | → |
| Perspectives of surrogate decision makers for critically ill patients regarding gene variation research. | Iverson E et al. | — | 2013 | → |
| Considerations in the construction of an instrument to assess attitudes regarding critical illness gene variation research. | Freeman BD et al. | — | 2012 | → |
| Understanding participation by African Americans in cancer genetics research. | McDonald JA et al. | — | 2012 | → |
| Effect of ethnicity, gender and drug use history on achieving high rates of affirmative informed consent for genetics research: impact of sharing with a national repository. | Ray B et al. | — | 2011 | → |
| Ethnic disparities in the perception of ethical risks from psychiatric genetic studies. | Nwulia EA et al. | — | 2011 | → |
| "If I could in a small way help": motivations for and beliefs about sample donation for genetic research. | Michie M et al. | — | 2011 | → |
| "Mama just won't accept this": adult perspectives on engaging depressed African American teens in clinical research and treatment. | Breland-Noble AM et al. | — | 2011 | → |
| Patient perspectives on group benefits and harms in genetic research. | Goldenberg AJ et al. | — | 2011 | → |
| Public perspectives on returning genetics and genomics research results. | O'Daniel J et al. | — | 2011 | → |
| African Americans' responses to genetic explanations of lung cancer disparities and their willingness to participate in clinical genetics research. | White DB et al. | — | 2010 | → |
| The role of race and trust in tissue/blood donation for genetic research. | Bussey-Jones J et al. | — | 2010 | → |
| An exploration of attitudes among black Americans towards psychiatric genetic research. | Murphy E et al. | — | 2009 | → |
| Asking the right questions: views on genetic variation research among black and white research participants. | Bussey-Jones J et al. | — | 2009 | → |
| Community-based dialogue: engaging communities of color in the United states' genetics policy conversation. | Bonham VL et al. | — | 2009 | → |
| Racial and ethnic differences in willingness to participate in psychiatric genetic research. | Murphy EJ et al. | — | 2009 | → |
| Great expectations: views of genetic research participants regarding current and future genetic studies. | Henderson G et al. | — | 2008 | → |
| Participant characteristics that influence consent for genetic research in a population-based survey: the Baltimore epidemiologic catchment area follow-up. | Mezuk B et al. | — | 2008 | → |
| Public willingness to participate in and public opinions about genetic variation research: a review of the literature. | Sterling R et al. | — | 2006 | → |
| Racial and ethnic disparity in participation in DNA collection at the Atlanta site of the National Birth Defects Prevention Study. | Crider KS et al. | — | 2006 | → |
| Facilitating informed decision making about breast cancer risk and genetic counseling among women calling the NCI's Cancer Information Service. | Miller SM et al. | — | 2005 | → |
| Recruitment of families for genetic studies of epilepsy. | Ottman R et al. | — | 2005 | → |
| Gender disparities in health: attending to the particulars. | McGrath BB et al. | — | 2004 | → |