Adoption and the communication of genetic risk: experiences in Huntington disease

Bombard, Yvonne; Semaka, Alicia; Hayden, Michael R.

doi:10.1111/j.1399-0004.2010.01614.x

Cited by 8 publications

(4 citation statements)

References 20 publications

(26 reference statements)

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“… 9 – 11 Nevertheless, adoptees can face ethical and practical challenges when attempting to learn genetic risk information. 12 Anecdotal reports from PGT companies and in the media suggests that adoptees have used PGT from Family Tree DNA and 23andMe, Inc. (23andMe) to find biological family members and learn ancestry information. 4 , 13 Beyond this, little is known about PGT customers who were adopted and there is no consensus on the appropriateness of disclosing genetic results to those with limited family history information.…”

Section: Introductionmentioning

confidence: 99%

Adopting genetics: motivations and outcomes of personal genomic testing in adult adoptees

Baptista

Christensen

Carere

et al. 2016

Genetics in Medicine

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Purpose-American adult adoptees may possess limited amounts of information about their biological families and turn to direct-to-consumer personal genomic testing (PGT) for genealogical and medical information. We investigated the motivations and outcomes of adoptees undergoing PGT using data from the Impact of Personal Genomics (PGen) Study. Methods-ThePGen Study surveyed new 23andMe and Pathway Genomics customers prior to and 6 months after receiving PGT results. Exploratory analyses compared adoptees' and nonadoptees' PGT attitudes, expectations, and experiences. We evaluated the association of adoption status with motivations for testing and post-disclosure actions using logistic regression models.Results-Of 1607 participants, 80 (5%) were adopted. As compared to non-adoptees, adoptees were more likely to cite limited family health history knowledge (OR = 10.1; 95% CI = 5.7-19.5) and the opportunity to learn genetic disease risks (OR = 2.7; 95% CI = 1.6-4.8) as strong motivations for PGT. Of 922 participants who completed 6-month follow-up, there was no Users may view, print, copy, and download text and data-mine the content in such documents, for the purposes of academic research, subject always to the full Conditions of use:http://www.nature.com/authors/editorial_policies/license.html#terms Figure S1 presents a flowchart of the PGen Study design and indicates the composition of the baseline and 6-month survey samples. Table S1 and Figure S2 compare the self-reported family health history information of adoptees and non-adoptees. Table S2 presents adoptees' and non-adoptees' views on genetic privacy 6 months following PGT. Table S3, Table S4, and Table S5 compare the demographics of the 6-month survey sample to those who were not retained for follow-up or excluded from the 6-month analyses for all participants, for adoptees, and for non-adoptees, respectively. Author Manuscript significant association between adoption status and PGT-motivated healthcare utilization or health behavior change. HHS Public AccessConclusion-PGT allows adoptees to gain otherwise inaccessible information about their genetic disease risks and ancestry, helping them to fill the void of an incomplete family health history.

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Section: Introductionmentioning

confidence: 99%

Adopting genetics: motivations and outcomes of personal genomic testing in adult adoptees

Baptista

Christensen

Carere

et al. 2016

Genetics in Medicine

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“…EGT could provide adoptees with risk information to pass on to future generations, reducing the mystery surrounding lack of FHH 10. Even when genetic risks are known that would impact adoptees and their families, access to this information may not be granted and communication of this knowledge can be incorrect or untimely 29. Therefore, adoptees may be particularly motivated to learn risk information to directly communicate with family members.…”

Section: Discussionmentioning

confidence: 99%

Adopted individuals’ interest in elective genomic testing

et al. 2020

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PurposeAdoptees are a population that could benefit from genetic testing to fill gaps in family health history (FHH). Elective genomic testing (EGT) provides adoptees with clinical genetic testing options to learn about genetic health risks in the absence of FHH. We assessed adoptees’ interests in, motivations for and perceived utility of EGT.MethodsAdult adoptees and non-adoptees completed an anonymous, online survey regarding their interest and motivations for EGT, perceived utility of potential results and willingness to pay for EGT. A validated measure of social identity was included to measure the effects of social identity on testing interest.ResultsThere were 112 adoptees and 229 non-adoptees included in the study. Adoptees reported greater interest in EGT (OR 5.0, 95% CI 2.2 to 11.3) than non-adoptees. They were motivated by curiosity and a desire to learn information about risks to children and grandchildren more than non-adoptees. Adoptees with higher education and non-adoptees with higher incomes were significantly more likely to spend more on EGT. Adoptees with higher incomes and non-adoptees with higher education were not significantly more likely to spend more. Social identity was a significant mediator between adoption and testing motivation.ConclusionUnderstanding adoptees’ unique motivations and interests in EGT will allow healthcare providers to better address the informational needs and desires of this population. Social identity provides a foundation for recognising adoptees’ universal experiences that influence motivations for genetic testing.

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“…However, it was acknowledged that this strategy may raise considerable ethical challenges when trying to balance the rights of patients (to confidentiality) with the rights of (unknowing) relatives (Lucassen & Gilbar, ). As a consequence, participants concluded that there would always be difficult areas and ‘extreme circumstances’, for example, adoption and Huntington's disease, which engender ongoing debates and ethical tensions (Bombard, Semaka, & Hayden, ). From a broader perspective, the passage of time was also highlighted as important in relation to changing family roles and levels of communication by those ‘chipping away’ or taking a more limited role, supporting previous research which demonstrates the need for genetic health professionals to be aware of the changing nature of parent/child communication about genetic risk at different life stages, e.g.…”

Section: Discussionmentioning

confidence: 99%

Genetics professionals’ experiences of facilitating parent/child communication through the genetic clinic

Keenan

McKee

Miedzybrodzka

2019

Journal of Genetic Counseling

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While guidelines advise genetic health professionals to support and encourage family communication about genetic risk, there can be professional uncertainty when advising parents about communication with children. We sought to explore genetic health professionals’ views and experiences of facilitating parent/child communication in clinical practice, particularly in relation to adult‐onset inherited conditions. Twenty‐three in‐depth interviews were conducted with United Kingdom genetic health professionals. Thematic analysis identified four main themes: offer professional involvement, encourage early disclosure, take a limited role, and challenges. Overall, our findings demonstrate a wide variation in genetic health professionals approaches to the provision of disclosure advice to parents, ranging from professionals who offered their communication skills and expertise, to those who took a limited role and reflected they were struggling, or even felt stuck. Giving tailored advice to parents about the timing of disclosure i.e. when to tell children, was a particular challenge because of the variability in children's maturity and coping styles. Nevertheless, we identified a range of strategies which were drawn upon by participants to facilitate parent/child communication in the genetic clinic. In conclusion, study results indicate that this remains a challenging and sensitive area, in which genetics professionals express a need for more resources and the clinical time to undertake this work. Further research is needed to develop and evaluate interventions which assist parent/child communication about serious inherited conditions and to help develop professionals’ confidence and skills in this area.

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Adoption and the communication of genetic risk: experiences in Huntington disease

Cited by 8 publications

References 20 publications

Adopting genetics: motivations and outcomes of personal genomic testing in adult adoptees

Adopting genetics: motivations and outcomes of personal genomic testing in adult adoptees

Adopted individuals’ interest in elective genomic testing

Genetics professionals’ experiences of facilitating parent/child communication through the genetic clinic

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