Can targeted genetic testing offer useful health information to adoptees?

May, Thomas; Strong, Kimberly A.; Khoury, Muin J.; Evans, James P.

doi:10.1038/gim.2015.58

Cited by 22 publications

(17 citation statements)

References 13 publications

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“…The restrictive view of genetic testing in adoption has been put forward by several authors (Morris et al 1988 ; Newson and Leonard 2010 ) and challenged by others, who see that the interests of a child may indeed be bound up in the outcome of a decision about adoption (Jansen and Ross 2001 ). It has also been argued that genetic testing, even a genome sequence, may be appropriate in children being considered for adoption because the family history information available to the prospective adopters is often poor and the genome sequence will compensate for this (May et al 2015 ). Counter arguments to this last claim are numerous and persuasive, for the present, as the interpretation of a genome sequence is still far from straightforward and the introduction of yet more genomic uncertainty into the portfolio of information about the child is unlikely to help the prospects of her or him being adopted.…”

Section: Genetic Testing Of (Young) Childrenmentioning

confidence: 99%

Ethics in genetic counselling

Wallgren‐Pettersson

2018

J Community Genet

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Difficult ethical issues arise for patients and professionals in medical genetics, and often relate to the patient's family or their social context. Tackling these issues requires sensitivity to nuances of communication and a commitment to clarity and consistency. It also benefits from an awareness of different approaches to ethical theory. Many of the ethical problems encountered in genetics relate to tensions between the wishes or interests of different people, sometimes even people who do not (yet) exist or exist as embryos, either in an established pregnancy or in vitro. Concern for the long-term welfare of a child or young person, or possible future children, or for other members of the family, may lead to tensions felt by the patient (client) in genetic counselling. Differences in perspective may also arise between the patient and professional when the latter recommends disclosure of information to relatives and the patient finds that too difficult, or when the professional considers the genetic testing of a child, sought by parents, to be inappropriate. The expectations of a patient's community may also lead to the differences in perspective between patient and counsellor. Recent developments of genetic technology permit genome-wide investigations. These have generated additional and more complex data that amplify and exacerbate some pre-existing ethical problems, including those presented by incidental (additional sought and secondary) findings and the recognition of variants currently of uncertain significance, so that reports of genomic investigations may often be provisional rather than definitive. Experience is being gained with these problems but substantial challenges are likely to persist in the long term.

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Section: Genetic Testing Of (Young) Childrenmentioning

confidence: 99%

Ethics in genetic counselling

Wallgren‐Pettersson

2018

J Community Genet

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“…Because adoptees may differ from the general population in their responses to PGT, there is a need for empirical study of how adoptees perceive and utilize PGT results. 10 …”

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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“…However, for those who lack FHx, a very different evaluative framework will apply (May et al , 2015). For these individuals, we must consider the likelihood that early identification of disease could be arrived at in another way, absent the use of traditional FHx.…”

Section: Costsmentioning

confidence: 99%

“…In addition, for those adoptees who do have access to FHx, this is often inadequate, and seldom iterative, calling into question its clinical value (Classen et al , 2010). Elsewhere, we have argued that targeted genetic testing has the potential for mitigating the deleterious impact of adoptees’ access to adequate FHx (May et al , 2015). Here, we explore the potential economic implications of such testing in this context (Quinn and Vadaparampil, 2016).…”

mentioning

confidence: 99%

Addressing perceived economic obstacles to genetic testing as a way to mitigate disparities in family health history for adoptees

May

2018

HEPL

Self Cite

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In this paper, we ask whether or not we can afford to realize the potential benefits of genetic testing as a screening tool for adoptees. Our method is to provide reasonable cost and savings estimates. We argue that the prospect of cost neutrality should be sufficient to explore the targeted screening for a population who will otherwise suffer an avoidable health disparity in access to inherited disease information. Our goal here is to establish that the investment needed to attain these benefits is not beyond our means.

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Can targeted genetic testing offer useful health information to adoptees?

Cited by 22 publications

References 13 publications

Ethics in genetic counselling

Ethics in genetic counselling

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

Addressing perceived economic obstacles to genetic testing as a way to mitigate disparities in family health history for adoptees

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