The Roles of Trust and Respect in Patient Reactions to Race-based and Personalized Medicine Vignettes: An Experimental Study
|The safety and scientific validity of this study is the responsibility of the study sponsor and investigators. Listing a study does not mean it has been evaluated by the U.S. Federal Government. Read our disclaimer for details.|
|ClinicalTrials.gov Identifier: NCT00911833|
Recruitment Status : Completed
First Posted : June 2, 2009
Last Update Posted : July 2, 2017
- Genetic research has implications for drug development and marketing. Race-based medicine may be able to provide specific treatment for populations with increased disease-specific morbidity and mortality. However, contemporary genetic research refutes the idea that races are genetically distinct populations, even as drugs designed for use in specific races are being promoted.
- Studies have shown high levels of public suspicion for race-based and personalized genetic medicine. Concerns related to not only the potential performance of race-based drugs, but also the motives of those offering these drugs. Many participants have suggested conspiracy theories in which race-based medicine was disguising an attempt to provide inferior medications or deliberately harm certain populations. Concerns about personalized medicine often have to do with privacy and other personal concerns.
- Public suspicions of race-based medicine, and to a lesser extent, personalized genetic medicine, make it important to examine and understand the theoretical and empirical literature on trust and health care.
- To describe the perspective of participants evaluating the medicine offer.
- Males and females ages 18 and older who are visiting the John Hopkins clinics (primarily the adult care clinics).
- Participants must be able to take a literacy screen and respond to a short survey.
- Participants will be asked to take a researcher-administrated literacy screen, read one of three randomly assigned vignettes, and fill out a survey. The first page of the survey will provide information about the study.
- Participants will respond to initial questions about demographics, experiences with discrimination, and trust in the medical profession and institutions.
- Each participant will receive a random vignette in which he/she will imagine him/herself being diagnosed with a common, chronic condition and offered a conventional drug, a race-based drug, or a genetically personalized drug.
- After being presented with the vignette, participants will be asked to respond to a survey that asks about their levels of trust in the vignette doctor, perceived respect given to the patient by the vignette physician, emotional response to the vignette, their belief in the effectiveness and safety of the drug prescribed in the vignette, information sufficiency, and their hypothetical behavioral intention to take the drug.
- Participants will be debriefed after completing the survey, and will be offered a small amount of compensation for participating.
|Condition or disease|
|Diabetes Congenital Heart Disease Hypertension|
|Study Type :||Observational|
|Estimated Enrollment :||600 participants|
|Official Title:||The Roles of Trust and Respect in Patient Reactions to Race-Based and Personalized Medicine Vignettes: An Experimental Study|
|Study Start Date :||May 19, 2009|
|Study Completion Date :||March 30, 2011|
To learn more about this study, you or your doctor may contact the study research staff using the contact information provided by the sponsor.
Please refer to this study by its ClinicalTrials.gov identifier (NCT number): NCT00911833
|United States, Maryland|
|National Human Genome Research Institute (NHGRI), 9000 Rockville Pike|
|Bethesda, Maryland, United States, 20892|