Attitude towards pre-implantation genetic diagnosis for hereditary cancer

Abstract

The use of pre-implantation genetic diagnosis (PGD) for hereditary cancer is subject to on-going debate, particularly among professionals. This study evaluates the attitude towards PGD and attitude-associated characteristics of those concerned: family members with a hereditary cancer predisposition. Forty-eight Von Hippel-Lindau and 18 Li-Fraumeni Syndrome families were identified via the 9 family cancer clinics in the Netherlands. In total, 216 high risk family members and partners were approached, of whom 179 (83%) completed a self-report questionnaire. Of the high risk family members, 35% expressed a positive attitude towards PGD. Those with a current desire to have children were significantly more likely to have a positive attitude: 48% would consider the use of PGD. No other sociodemographic, medical or psychosocial variables were associated significantly with a positive attitude. The most frequently reported advantage of PGD is the avoidance of a possible pregnancy termination. Uncertainty about late effects was the most frequently reported disadvantage. These results indicate that approximately half of those contemplating a future pregnancy would consider the use of PGD. The actual uptake, however, is expected to be lower. There is no indication that psychosocial factors affect interest in PGD.

High-risk consumers’ perceptions of preimplantation genetic diagnosis for hereditary cancers: a systematic review and meta-analysis

“…Of the 13 included studies, 54% (7/13) assessed consumer attitudes toward PGD for HBOC, 11,20,21,31-34 15% (2/13) Familial adenomatous polyposis (FAP), 35,36 8% (1/13) Von HippelLindau and Li-Fraumeni syndrome, 37 and 23% (3/13) attitudes of PGD for hereditary cancers in general. [38][39][40] Total enrollment from all 13 studies was 5,294 participants, with a pooled average response rate of 75%.…”

“…[38][39][40] Total enrollment from all 13 studies was 5,294 participants, with a pooled average response rate of 75%. Twenty-three percent (3/13) of studies 20,39,40 did not report the response rate of high-risk consumers, while the response rate in the qualitative study by Quinn et al 32 was not counted because this study used a subset of participants from the study by Vadaparampil et al 20 All studies were prospective, cross-sectional with 10 using strictly quantitative methods, 11,21,31,[34][35][36][37][38][39][40] 1 qualitative methods, 32 and 2 mixed methods. 20,33 The median sample size was approximately 213 participants (range, 10-2,110).…”

“…Thirty-one percent (4/13) of studies 20,31,33,34 only recruited female participants, while the remaining studies recruited male and female participants. Twenty-three percent (3/13) of studies 35,37,38 included partners or family members. The age of the participants ranged from 16 to 75 years in all included studies.…”

“…The age of the participants ranged from 16 to 75 years in all included studies. Only one study reported the median age of participants, 43,31 while 69% (9/13) 11,21,33,34,[36][37][38][39][40] reported average age, making the overall average age of high-risk participants 37.8. Three studies did not indicate either median or average age of participants.…”

“…20,32,39 Krones et al 39 only reported age of female participants as <40 years and male participants as <50 years. Fifty-four percent (7/13) of studies 11,31,32,[36][37][38]40 assessed religion among the participants. Only 23% (3/13) of studies 32,36,38 reported race/ethnicity of participants.…”