Young adult daughters of <i>BRCA1/2</i> positive mothers: What do they know about hereditary cancer and how much do they worry?

Patenaude, Andrea Farkas; Tung, Nadine; Ryan, Paula D.; Ellisen, Leif W.; Hewitt, Larissa; Schneider, Katherine A.; Tercyak, Kenneth P.; Aldridge, Julie; Garber, Judy E.

doi:10.1002/pon.3257

Cited by 49 publications

(91 citation statements)

References 33 publications

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“…Many participants reported having grown up without awareness or with misinformation about the genetic disease running in their family or its inheritance mode: 12,16,21 they also lacked information about the appropriate age for testing. 12,16 Two sets of authors reported that the first communication about the genetic risk was made by parents. 14,16 None of the participants was younger than 12 years of age when informed, about half experienced disclosure before they were 18 years old and half between 18 and 21 years old.…”

Section: Presymptomatic Genetic Testing In Young Adultsmentioning

confidence: 99%

“…12,16 Two sets of authors reported that the first communication about the genetic risk was made by parents. 14,16 None of the participants was younger than 12 years of age when informed, about half experienced disclosure before they were 18 years old and half between 18 and 21 years old. Many participants stated that the disclosure was made during an occasional encounter and in a casual moment (ie, while driving) or by telephone.…”

Section: Presymptomatic Genetic Testing In Young Adultsmentioning

confidence: 99%

“…Eligible studies were conducted in Australia, 12,13,15,17 Canada, 14,18,19 United Kingdom, 11 and the United States. 16 …”

Section: Characteristics Of Included Studiesmentioning

confidence: 99%

“…Methods adopted by the authors were interpretative phenomenological analysis, 11 thematic analysis, 12-16 a combination of interpretative content analysis and thematic analysis, 17 or grounded theory. [17][18][19][20][21] Patenaude et al 16 also included a quantitative analysis of their data.…”

Section: Characteristics Of Included Studiesmentioning

confidence: 99%

“…All the included studies were published between 2007 and 2014 and were focused on few specific heritable disorders, namely autosomal dominant cerebellar ataxia, 15 familial adenomatous polyposis (FAP), 13,17 familial cardiomyopathy, 11 HBOC, 11,[14][15][16][18][19][20][21] hereditary diffuse gastric cancer, 15 HD 2,12,15,17 and Lynch syndrome. 15 Samples included participants within an age range of 12-39 years, thus including, but not limited to, the age range of 14-30 years identified by the authors as the focus of the search.…”

Section: Characteristics Of Included Studiesmentioning

confidence: 99%

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Impact of presymptomatic genetic testing on young adults: a systematic review

et al. 2015

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Presymptomatic and predictive genetic testing should involve a considered choice, which is particularly true when testing is undertaken in early adulthood. Young adults are at a key life stage as they may be developing a career, forming partnerships and potentially becoming parents: presymptomatic testing may affect many facets of their future lives. The aim of this integrative systematic review was to assess factors that influence young adults' or adolescents' choices to have a presymptomatic genetic test and the emotional impact of those choices. Peer-reviewed papers published between January 1993 and December 2014 were searched using eight databases. Of 3373 studies identified, 29 were reviewed in full text: 11 met the inclusion criteria. Thematic analysis was used to identify five major themes: period befeore testing, experience of genetic counselling, parental involvement in decision-making, impact of test result communication, and living with genetic risk. Many participants grew up with little or no information concerning their genetic risk. The experience of genetic counselling was either reported as an opportunity for discussing problems or associated with feelings of disempowerment. Emotional outcomes of disclosure did not directly correlate with test results: some mutation carriers were relieved to know their status, however, the knowledge they may have passed on the mutation to their children was a common concern. Parents appeared to have exerted pressure on their children during the decision-making process about testing and risk reduction surgery. Health professionals should take into account all these issues to effectively assist young adults in making decisions about presymptomatic genetic testing.

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Section: Presymptomatic Genetic Testing In Young Adultsmentioning

confidence: 99%

Section: Presymptomatic Genetic Testing In Young Adultsmentioning

confidence: 99%

“…Eligible studies were conducted in Australia, 12,13,15,17 Canada, 14,18,19 United Kingdom, 11 and the United States. 16 …”

Section: Characteristics Of Included Studiesmentioning

confidence: 99%

Section: Characteristics Of Included Studiesmentioning

confidence: 99%

Section: Characteristics Of Included Studiesmentioning

confidence: 99%

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Impact of presymptomatic genetic testing on young adults: a systematic review

et al. 2015

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Developmentally Based Approaches for Counseling Children and Adolescents

Austin¹,

Schoch²

2020

Genetic Counseling Practice

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The Precision Medicine Nation

Sabatello¹,

Appelbaum²

2017

Hastings Center Report

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The United States’ ambitious Precision Medicine Initiative proposes to accelerate exponentially the adoption of precision medicine, an approach to health care that tailors disease diagnosis, treatment, and prevention to individual variability in genes, environment, and lifestyle. It aims to achieve this by creating a cohort of volunteers for precision medicine research, accelerating biomedical research innovation, and adopting policies geared toward patients’ empowerment. As strategies to implement the PMI are formulated, critical consideration of the initiative's ethical and sociopolitical dimensions is needed. Drawing on scholarship of nationalism and democracy, we discuss the PMI's construction of what we term “genomic citizenship”; the possible normative obligations arising therefrom; and the ethical, legal, and social challenges that will ensue. Although the PMI is a work in progress, discussion of the existing and emerging issues can facilitate the development of policies, structures, and procedures that can maximize the initiative's ability to produce equitable and socially sensitive outcomes. Our analysis can also be applied to other population‐based, precision medicine research programs.

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Young adult daughters of BRCA1/2 positive mothers: What do they know about hereditary cancer and how much do they worry?

Cited by 49 publications

References 33 publications

Impact of presymptomatic genetic testing on young adults: a systematic review

Impact of presymptomatic genetic testing on young adults: a systematic review

Developmentally Based Approaches for Counseling Children and Adolescents

The Precision Medicine Nation

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