Patient and Family Participation in Genetic Research Studies

Pitfalls and Challenges of Consenting to Genetic Research Studies

Kidney International Reports ◽

10.1016/j.ekir.2018.08.004 ◽

2018 ◽

Vol 3 (6) ◽

pp. 1245-1248

Author(s):

Hila Milo Rasouly ◽

Maddalena Marasa

Keyword(s):

Genetic Research ◽

Research Studies

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Sistas Taking a Stand for Breast Cancer Research (STAR) Study: A Community-Based Participatory Genetic Research Study to Enhance Participation and Breast Cancer Equity among African American Women in Memphis, TN

International Journal of Environmental Research and Public Health ◽

10.3390/ijerph15122899 ◽

2018 ◽

Vol 15 (12) ◽

pp. 2899 ◽

Cited By ~ 3

Author(s):

Alana Smith ◽

Gregory Vidal ◽

Elizabeth Pritchard ◽

Ryan Blue ◽

Michelle Martin ◽

...

Keyword(s):

Breast Cancer ◽

Cancer Research ◽

African American ◽

African American Women ◽

Genetic Research ◽

Health Questionnaire ◽

Cancer Genetic ◽

Community Based ◽

American Women ◽

Research Studies

African American women are substantially underrepresented in breast cancer genetic research studies and clinical trials, yet they are more likely to die from breast cancer. Lack of trust in the medical community is a major barrier preventing the successful recruitment of African Americans into research studies. When considering the city of Memphis, TN, where the percentage of African Americans is significantly higher than the national average and it has a high rate of breast cancer mortality inequities among African American women, we evaluated the feasibility of utilizing a community-based participatory (CBPR) approach for recruiting African American women into a breast cancer genetic study, called the Sistas Taking A Stand for Breast Cancer Research (STAR) study. From June 2016 and December 2017, African American women age 18 and above were recruited to provide a 2 mL saliva specimen and complete a health questionnaire. A total of 364 African American women provided a saliva sample and completed the health questionnaire. Greater than 85% agreed to be contacted for future studies. Educational workshops on the importance of participating in cancer genetic research studies, followed by question and answer sessions, were most successful in recruitment. Overall, the participants expressed a strong interest and a willingness to participate in the STAR study. Our findings highlight the importance of implementing a CBPR approach that provides an educational component detailing the importance of participating in cancer genetic research studies and that includes prominent community advocates to build trust within the community.

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Behavioral Genetics: Concepts for Research and Practice in Language Development and Disorders

Journal of Speech Language and Hearing Research ◽

10.1044/jshr.3805.1126 ◽

1995 ◽

Vol 38 (5) ◽

pp. 1126-1142 ◽

Cited By ~ 14

Author(s):

Jeffrey W. Gilger

Keyword(s):

Language Development ◽

Behavioral Genetics ◽

State Of The Art ◽

Genetic Research ◽

Great Promise ◽

Behavioral Genetic ◽

Fine Grained ◽

Future Goals ◽

Current State ◽

Research Designs

This paper is an introduction to behavioral genetics for researchers and practioners in language development and disorders. The specific aims are to illustrate some essential concepts and to show how behavioral genetic research can be applied to the language sciences. Past genetic research on language-related traits has tended to focus on simple etiology (i.e., the heritability or familiality of language skills). The current state of the art, however, suggests that great promise lies in addressing more complex questions through behavioral genetic paradigms. In terms of future goals it is suggested that: (a) more behavioral genetic work of all types should be done—including replications and expansions of preliminary studies already in print; (b) work should focus on fine-grained, theory-based phenotypes with research designs that can address complex questions in language development; and (c) work in this area should utilize a variety of samples and methods (e.g., twin and family samples, heritability and segregation analyses, linkage and association tests, etc.).

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Conducting Dysphagia Research in the Field Through Partnerships With Clinicians

Perspectives on Swallowing and Swallowing Disorders (Dysphagia) ◽

10.1044/sasd20.2.36 ◽

2011 ◽

Vol 20 (2) ◽

pp. 36-41

Author(s):

Catriona M. Steele

Keyword(s):

Dysphagia Research ◽

Research Studies

Research studies that involve collaborations between scientists and frontline clinicians provide rich opportunities for advancing knowledge in the field of dysphagia. However, various challenges exist in bridging research goals and clinical priorities. In this article, we explore the perspectives of those who have participated in previous collaborations to gain insights regarding the challenges, surprises, and benefits of such collaboration.

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