Researcher practices on returning genetic research results. 2010

Christopher Heaney, and Genevieve Tindall, and Joe Lucas, and Susanne B Haga
Institute for Genome Sciences and Policy, Duke University, Durham, North Carolina 27708, USA.

OBJECTIVE as genetic and genomic research proliferates, debate has ensued about returning results to participants. In addition to consideration of the benefits and harms to participants, researchers must also consider the logistical and financial feasibility of returning research results. However, little data exist of actual researcher practices. METHODS we conducted an online survey of 446 corresponding authors of genetic/genomic studies conducted in the United States and published in 2006-2007 to assess the frequency with which they considered, offered to, or actually returned research results, what factors influenced these decisions, and the method of communicating results. RESULTS the response rate was 24% (105/446). Fifty-four percent of respondents considered the issue of returning research results to participants, 28% offered to return individual research results, and 24% actually returned individual research results. Of those who considered the issue of returning research results during the study planning phase, the most common factors considered were whether research results were deemed clinically useful (18%) and respect for participants (13%). Researchers who had a medical degree and conducted studies on children were significantly more likely to offer to return or actually return individual results compared to those with a Ph.D. only. CONCLUSIONS we speculate that issues associated with clinical validity and respect for participants dominated concerns of time and expense given the prominent and continuing ethical debates surrounding genetics and genomics research. The substantial number of researchers who did not consider returning research results suggests that researchers and institutional review boards need to devote more attention to a topic about which research participants are interested.

UI MeSH Term Description Entries
D011364 Professional Practice The use of one's knowledge in a particular profession. It includes, in the case of the field of biomedicine, professional activities related to health care and the actual performance of the duties related to the provision of health care. Practice, Professional,Practices, Professional,Professional Practices
D012108 Research Personnel Those individuals engaged in research. Clinical Investigator,Clinical Investigators,Researchers,Investigator, Clinical,Investigators,Investigators, Clinical,Survey Personnel,Investigator,Personnel, Research,Personnel, Survey,Researcher
D003625 Data Collection Systematic gathering of data for a particular purpose from various sources, including questionnaires, interviews, observation, existing records, and electronic devices. The process is usually preliminary to statistical analysis of the data. Data Collection Methods,Dual Data Collection,Collection Method, Data,Collection Methods, Data,Collection, Data,Collection, Dual Data,Data Collection Method,Method, Data Collection,Methods, Data Collection
D005820 Genetic Testing Detection of a MUTATION; GENOTYPE; KARYOTYPE; or specific ALLELES associated with genetic traits, heritable diseases, or predisposition to a disease, or that may lead to the disease in descendants. It includes prenatal genetic testing. Genetic Predisposition Testing,Genetic Screening,Predictive Genetic Testing,Predictive Testing, Genetic,Testing, Genetic Predisposition,Genetic Predictive Testing,Genetic Screenings,Genetic Testing, Predictive,Predisposition Testing, Genetic,Screening, Genetic,Screenings, Genetic,Testing, Genetic,Testing, Genetic Predictive,Testing, Predictive Genetic
D006801 Humans Members of the species Homo sapiens. Homo sapiens,Man (Taxonomy),Human,Man, Modern,Modern Man
D014481 United States A country in NORTH AMERICA between CANADA and MEXICO.
D022126 Access to Information Individual's rights to obtain and use information collected or generated by others. FOIA Requests,Freedom of Information Act Requests,Open Access to Information,Public Access to Information,FOIA Request,Information, Access to,Request, FOIA,Requests, FOIA
D036281 Genetic Research Research into the cause, transmission, amelioration, elimination, or enhancement of inherited disorders and traits. Research, Genetic

Related Publications

Christopher Heaney, and Genevieve Tindall, and Joe Lucas, and Susanne B Haga
January 2013, Personalized medicine,
Christopher Heaney, and Genevieve Tindall, and Joe Lucas, and Susanne B Haga
December 2024, Neurology. Genetics,
Christopher Heaney, and Genevieve Tindall, and Joe Lucas, and Susanne B Haga
February 2006, Bioethics,
Christopher Heaney, and Genevieve Tindall, and Joe Lucas, and Susanne B Haga
July 2014, Genetic testing and molecular biomarkers,
Christopher Heaney, and Genevieve Tindall, and Joe Lucas, and Susanne B Haga
January 2021, Public health genomics,
Christopher Heaney, and Genevieve Tindall, and Joe Lucas, and Susanne B Haga
January 2013, Advances in genetics,
Christopher Heaney, and Genevieve Tindall, and Joe Lucas, and Susanne B Haga
November 2024, Kidney international reports,
Christopher Heaney, and Genevieve Tindall, and Joe Lucas, and Susanne B Haga
August 2020, Clinical journal of the American Society of Nephrology : CJASN,
Christopher Heaney, and Genevieve Tindall, and Joe Lucas, and Susanne B Haga
November 2017, Genetics in medicine : official journal of the American College of Medical Genetics,
Christopher Heaney, and Genevieve Tindall, and Joe Lucas, and Susanne B Haga
December 2007, Qualitative health research,
Copied contents to your clipboard!