High risk men's perceptions of pre-implantation genetic diagnosis for hereditary breast and ovarian cancer

Quinn, Gwendolyn P.; Vadaparampil, Susan T.; Miree, Cheryl A.; Lee, Ji‐Hyun; Zhao, Xiuhua; Friedman, Susan J.; Yi, Susan; Mayer, James C.

doi:10.1093/humrep/deq207

Cited by 26 publications

(27 citation statements)

References 32 publications

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“…A recent study suggests that a minority of men would consider PGD for BRCA. 37 This requires further research. Response rate was o50% among women, and hence the findings of this study may not reflect attitudes of all eligible women.…”

Section: Discussionmentioning

confidence: 99%

Attitudes to reproductive genetic testing in women who had a positive BRCA test before having children: a qualitative analysis

et al. 2011

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The scope of conditions for which preimplantation genetic diagnosis (PGD) is licensed has recently been expanded in the United Kingdom to include genetic predisposition to adult-onset cancer. This qualitative interview study explores reproductive decision making, knowledge of and attitudes to reproductive genetic testing (prenatal diagnosis and PGD) with 25 women aged 18-45 years who received a positive BRCA test in the United Kingdom before having children. In this cohort of younger women, BRCA testing was motivated by risk management decisions; for some, BRCA status has affected their later decisions about having children. The perceived severity of hereditary breast/ovarian cancer (HBOC) influences thoughts about passing on the mutation to children and willingness to consider reproductive genetic testing, but most participants do not believe HBOC is a condition for which pregnancy termination is justified. PGD is considered more acceptable and advantageous because it would prevent transmission to future generations, but women have concerns about selecting embryos and the fact that they and affected family members would not have been selected. Women would also be deterred by the need to undergo in vitro fertilisation (IVF) and ovarian stimulation for PGD. Awareness of reproductive testing options was very variable among the cohort. The findings highlight the complexities of reproductive decision making for young women who knowingly carry a BRCA mutation, and the dilemmas inherent to reproductive genetic testing when the condition being tested for also affects a prospective parent. Counselling and psychological support for BRCA-positive women and couples concerning reproductive options are strongly indicated.

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Section: Discussionmentioning

confidence: 99%

Attitudes to reproductive genetic testing in women who had a positive BRCA test before having children: a qualitative analysis

et al. 2011

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“…Whilst there are clearly numerous research projects on attitudes towards various issues in genetics that have been particularly focussed on gathering the views of men (Quinn et al 2010), certain ethnic groups (Murphy and Thompson 2009, Ahmed, Ahmed et al 2012) and specific ages of people (Donnelly et al 2013) these are by far in the minority of the whole body of published work available.…”

Section: Discussionmentioning

confidence: 99%

Finding people who will tell you their thoughts on genomics—recruitment strategies for social sciences research

2014

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This paper offers a description of how social media, traditional media and direct invitation were used as tools for the recruitment of 6,944 research participants for a social sciences study on genomics. The remit was to gather the views of various stakeholders towards sharing incidental findings from whole genome studies. This involved recruiting members of the public, genetic health professionals, genomic researchers and non-genetic health professionals. A novel survey was designed that contained ten integrated films; this was made available online and open for completion by anyone worldwide. The recruitment methods are described together with the convenience and snowballing sampling framework. The most successful strategy involved the utilisation of social media; Facebook, Blogging, Twitter, LinkedIn and Google Ads led to the ascertainment of over 75 % of the final sample. We conclude that the strategies used were successful in recruiting in eclectic mix of appropriate participants. Design of the survey and results from the study are presented separately.

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“…In addition to reproductive counseling, decision support may be helpful to support couples during reproductive decision-making (Derks-Smeets et al 2014; Ormondroyd et al 2012; Quinn et al 2010a, 2012). Although recent studies have provided more insight into the reproductive decision-making process of carrier couples (Dekeuwer and Bateman 2013; Derks-Smeets et al 2014; Dommering et al 2010; Ormondroyd et al 2012), and the application of decision support has been advocated (Derks-Smeets et al 2014; Quinn et al 2010a, b), currently, no structural decision support is available. High-quality evidence shows positive effects of decision aids on various patient outcomes, such as increased knowledge regarding potential options, reduced decisional conflict, and facilitation of informed and value-based decision-making (Juraskova et al 2014; O’Connor and Jacobsen 2003; Stacey et al 2011).…”

Section: Introductionmentioning

confidence: 99%

Reproductive Decision Support: Preferences and Needs of Couples at Risk for Hereditary Cancer and Clinical Geneticists

Reumkens

Oudheusden

Gietel-Habets

et al. 2018

Journal of Genetic Counseling

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For couples at high risk of transmitting a cancer predisposition to offspring, reproductive decision-making can be challenging. As the choice between available reproductive options is preference-sensitive, the use of a decision aid can support these couples in their decisional process. The present study aims to investigate preferences and needs of involved stakeholders regarding the development and implementation of a patient decision aid. Semi-structured interviews assessing the needs and preferences regarding the content and functionalities of a decision support program were conducted among seven couples at risk for hereditary cancer and among eight clinical geneticists involved in oncogenetic counseling. Many similarities were found between the expressed preferences and needs of both stakeholder groups concerning the content, barriers and facilitating factors regarding the use of the decision aid, and its implementation. Emphasis was placed on the use of simple non-medical language, an extensive explanation of the procedures and techniques used in prenatal diagnosis (PND) and preimplantation genetic diagnosis (PGD), and the role of health care providers to refer couples to the decision aid. Both stakeholder groups were in favor of incorporating narrative stories in the decision aid. Integrating the present findings with knowledge on reproductive decisional motives and considerations is essential in guiding the development of a decision aid that corresponds to the preferences and needs of end-users. Trial registration: NTR5467

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High risk men's perceptions of pre-implantation genetic diagnosis for hereditary breast and ovarian cancer

Abstract: As with other anonymous web-based surveys, we cannot verify clinical characteristics that may impact consideration of PGD use. Our findings indicate high-risk men need more information about PGD and may benefit from educational materials to assist them in reproductive decision-making.

Cited by 26 publications

References 32 publications

Attitudes to reproductive genetic testing in women who had a positive BRCA test before having children: a qualitative analysis

Attitudes to reproductive genetic testing in women who had a positive BRCA test before having children: a qualitative analysis

Finding people who will tell you their thoughts on genomics—recruitment strategies for social sciences research

Reproductive Decision Support: Preferences and Needs of Couples at Risk for Hereditary Cancer and Clinical Geneticists

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