@article {238,
	title = {Attitudes of genetics professionals toward the return of incidental results from exome and whole-genome sequencing.},
	journal = {Am J Hum Genet},
	volume = {95},
	year = {2014},
	month = {2014 Jul 03},
	pages = {77-84},
	abstract = {<p>Professional recommendations for the return of results from exome and whole-genome sequencing (ES/WGS) have been controversial. The lack of clear guidance about whether and, if so, how to return ES/WGS incidental results limits the extent to which individuals and families might benefit from ES/WGS. The perspectives of genetics professionals, particularly those at the forefront of using ES/WGS in clinics, are largely unknown. Data on stakeholder perspectives could help clarify how to weigh expert positions and recommendations. We conducted an online survey of 9,857 genetics professionals to learn their attitudes on the return of incidental results from ES/WGS and the recent American College of Medical Genetic and Genomics Recommendations for Reporting of Incidental Findings in Clinical Exome and Genome Sequencing. Of the 847 respondents, 760 completed the survey. The overwhelming majority of respondents thought that incidental ES/WGS results should be offered to adult patients (85\%), healthy adults (75\%), and the parents of a child with a medical condition (74\%). The majority thought that incidental results about adult-onset conditions (62\%) and carrier status (62\%) should be offered to the parents of a child with a medical condition. About half thought that offered results should not be limited to those deemed clinically actionable. The vast majority (81\%) thought that individual preferences should guide return. Genetics professionals{\textquoteright} perspectives on the return of ES/WGS results differed substantially from current recommendations, underscoring the need to establish clear purpose for recommendations on the return of incidental ES/WGS results as professional societies grapple with developing and updating recommendations.</p>},
	keywords = {Adult, Attitude of Health Personnel, Child, Exome, Genetics, Medical, Genome, Human, Humans, Incidental Findings, Workforce},
	issn = {1537-6605},
	doi = {10.1016/j.ajhg.2014.06.004},
	author = {Yu, Joon-Ho and Harrell, Tanya M and Jamal, Seema M and Tabor, Holly K and Bamshad, Michael J}
}
@article {246,
	title = {Attitudes of non-African American focus group participants toward return of results from exome and whole genome sequencing.},
	journal = {Am J Med Genet A},
	volume = {164A},
	year = {2014},
	month = {2014 Sep},
	pages = {2153-60},
	abstract = {<p>Exome sequencing and whole genome sequencing (ES/WGS) present individuals with the opportunity to benefit from a broad scope of genetic results of clinical and personal utility. Yet, it is unclear which genetic results people want to receive (i.e., what type of genetic information they want to learn about themselves) or conversely not receive, and how they want to receive or manage results over time. Very little is known about whether and how attitudes toward receiving individual results from ES/WGS vary among racial/ethnic populations. We conducted 13 focus groups with a racially and ethnically diverse parent population (n = 76) to investigate attitudes toward return of individual results from WGS. We report on our findings for non-African American (non-AA) participants. Non-AA participants were primarily interested in genetic results on which they could act or "do something about." They defined "actionability" broadly to include individual medical treatment and disease prevention. The ability to plan for the future was both a motivation for and an expected benefit of receiving results. Their concerns focused on the meaning of results, specifically the potential inaccuracy and uncertainty of results. Non-AA participants expected healthcare providers to be involved in results management by helping them interpret results in the context of their own health and by providing counseling support. We compare and contrast these themes with those we previously reported from our analysis of African American (AA) perspectives to highlight the importance of varying preferences for results, characterize the central role of temporal orientation in framing expectations about the possibility of receiving ES/WGS results, and identify potential avenues by which genomic healthcare disparities may be inadvertently perpetuated.</p>},
	keywords = {Adult, African Americans, Aged, Attitude to Health, Exome, Female, Focus Groups, Genome, Human, Humans, Male, Middle Aged, Sequence Analysis, DNA},
	issn = {1552-4833},
	doi = {10.1002/ajmg.a.36610},
	author = {Yu, Joon-Ho and Crouch, Julia and Jamal, Seema M and Bamshad, Michael J and Tabor, Holly K}
}
