Research participants’ experiences with return of genetic research results and preferences for web‐based alternatives

• Published in: Molecular genetics & genomic medicine Vol. 7; no. 9; pp. e898 - n/a
• Main Authors: Gaieski, Jill B., Patrick‐Miller, Linda, Egleston, Brian L., Maxwell, Kara N., Walser, Sarah, DiGiovanni, Laura, Brower, Jamie, Fetzer, Dominique, Ganzak, Amanda, McKenna, Danielle, Long, Jessica M., Powers, Jacquelyn, Stopfer, Jill E., Nathanson, Katherine L., Domchek, Susan M., Bradbury, Angela R.
• Format: Journal Article
• Language: English
• Published: United States John Wiley & Sons, Inc 01.09.2019; John Wiley and Sons Inc; Wiley
• Subjects: Adult; Aged; Alternatives; BRCA1 protein; Breast cancer; Breast Neoplasms - diagnosis; Breast Neoplasms - genetics; Education; Female; Genetic Counseling; Genetic Predisposition to Disease; Genetic research; Genetic screening; Genetic Testing; Genetics; Humans; Middle Aged; Original; Patient Satisfaction; preferences for return of genetic research results; Questions; Researchers; return of genetic research results; Social support; Studies; web‐based alternatives to genetic counseling; Workforce; United States > US; Pennsylvania; genetic counseling; preferences for return of genetic research results; genetic testing; web-based alternatives to genetic counseling; return of genetic research results
• ISSN: 2324-9269; 2324-9269
• DOI: 10.1002/mgg3.898

Background While there is increasing interest in sharing genetic research results with participants, how best to communicate the risks, benefits and limitations of research results remains unclear. Methods Participants who received genetic research results answered open and closed‐ended questions about their experiences receiving results and interest in and advantages and disadvantages of a web‐based alternative to genetic counseling. Results 107 BRCA1/2 negative women with a personal or family history of breast cancer consented to receive genetic research results and 82% completed survey items about their experience. Most participants reported there was nothing they disliked (74%) or would change (85%) about their predisclosure or disclosure session (78% and 89%). They most frequently reported liking the genetic counselor and learning new information. Only 24% and 26% would not be willing to complete predisclosure counseling or disclosure of results by a web‐based alternative, respectively. The most frequently reported advantages included convenience and reduced time. Disadvantages included not being able to ask questions, the risk of misunderstanding and the impersonal nature of the encounter. Conclusion Most participants receiving genetic research results report high satisfaction with telephone genetic counseling, but some may be willing to consider self‐directed web alternatives for both predisclosure genetic education and return of results. Return of genetic research results is an increasing area of interest and concern for participants and researchers. How best to share this information remains unknown. Analysis of open and closed‐ended survey questions about experiences, and expectations about receiving research results, indicate high satisfaction with traditional genetic counseling but also participant willingness to consider web alternatives to both pre‐disclosure genetic education and actual return of results.