作者: Joon-Ho Yu , Julia Crouch , Seema M. Jamal , Holly K. Tabor , Michael J. Bamshad
DOI: 10.1002/AJMG.A.35914
关键词:
摘要: Exome sequencing and whole genome (ES/WGS) present patients research participants with the opportunity to benefit from a broad scope of genetic results clinical personal utility. Yet, this potential for also risks disenfranchising populations such as African Americans (AAs) that are already underrepresented in utilize tests at lower rates than other populations. Understanding diverse range perspectives on consenting ES/WGS receiving is necessary ensure parity genomic health care research. We conducted series 13 focus groups (n=76) investigate if how attitudes toward participation return differ between self described AAs non-AAs. The majority both non-AAs were willing participate WGS studies receive individual results, but fraction not interested either was higher AAs. This due part different expectations benefits should be managed. Our underscore need develop test culturally tailored strategies returning