Researchers’ Perceptions of the Ethical Implications of Pharmacogenomics Research with Children

Avard, Denise; Silverstein, T.; Sillon, Guillaume; Joly, Yann

doi:10.1159/000189633

Cited by 31 publications

(41 citation statements)

References 60 publications

(37 reference statements)

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“…Researchers and clinicians alike recognize the need for guidance and standardization regarding consent for PGx testing [42,43]; however, defining a uniform guideline may be challenging due to the variety of PGx tests available, purpose of testing (and when testing is performed) and perceived harms. The laboratory may be limited in its ability to develop consent forms for each potential use.…”

Section: Discussionmentioning

confidence: 99%

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A Review of Consent Practices and Perspectives for Pharmacogenetic testing

Haga

Mills

2016

Pharmacogenomics

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Aim:We aimed to understand consent practices for pharmacogenetic (PGx) testing. Methods: We conducted a literature review and analysis of consent forms from clinical laboratories offering PGx testing. Results: Our review of the literature shows a lack of consensus about the need for and type of informed consent for PGx testing. We identified 35 companies offering PGx testing and were able to confirm consent practices for 22 of those. We found a range of variability in the consent practices regarding the consent approach and information disclosed. Conclusion: Variability in the consent practices among laboratories offering PGx testing mirrors the ambiguous practices and recommendations reported in the literature. Establishing a minimal set of information to be disclosed to patients may help address the disparities in consent practice.

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Section: Discussionmentioning

confidence: 99%

“…As a result, decisions about the consent process may require test-specific considerations. However, both researchers and clinicians recognize the need for guidance and standardization regarding consent for PGx testing [42,43].…”

Section: Literature Reviewmentioning

confidence: 99%

A Review of Consent Practices and Perspectives for Pharmacogenetic testing

Haga

Mills

2016

Pharmacogenomics

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“…Parents reported that many contextual elements are important in considering both the benefits (such as impact on quality of life, prevention of harm, and reduction in secrecy) and the potential harms (such as impact on insurability or work, privacy, 8,24 limits of analytic accuracy, 7 and worries about the implications of the newly identified genetic condition). Although most of our respondents indicated that they would want to be notified of results with serious implications, there was an even stronger tendency to want them if remediable by treatment.…”

Section: Discussionmentioning

confidence: 99%

“…[4][5][6] Specific expert opinion on the implications of genomic research discovery in a pediatric context is emerging. [7][8][9] Adult participants in research strongly voice an interest in being offered genetic research results, including those incidental to the primary aims. 10,11 The empirical evidence to understand parental attitudes toward the sharing of genomic research results derived from research with children has just begun to be explored.…”

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confidence: 99%

Attitudes of parents toward the return of targeted and incidental genomic research findings in children

Fernandez

Bouffet

Malkin

et al. 2014

Genetics in Medicine

104

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Original research article introductionThe power of genomic research techniques is increasingly incorporated into the exploration of many conditions, including, more recently, the genomic profiles of rare (orphan) conditions and pediatric cancers. Consensus guidelines typically advise sharing target and incidental results that are analytically valid, actionable, and clinically significant. [1][2][3] Many expert recommendations are rooted in adult perspectives and attempt to weigh potential benefits and harms to the participants, as well as the feasibility of such sharing. [4][5][6] Specific expert opinion on the implications of genomic research discovery in a pediatric context is emerging.7-9 Adult participants in research strongly voice an interest in being offered genetic research results, including those incidental to the primary aims. 10,11 The empirical evidence to understand parental attitudes toward the sharing of genomic research results derived from research with children has just begun to be explored. [12][13][14][15] There is also considerable debate about the extent to which family members should be informed of potentially relevant genomic information gathered in a pediatric context. 16,17We used the rich resource of three Canadian consortia [18][19][20] that primarily study children to examine parental attitudes toward the return of genomic results. We were able to leverage the nature of the study populations-patients with pediatric cancers and individuals with inherited orphan diseases-to examine whether the context of the illness influences subsequent attitudes toward the return of genomic research results. It has been suggested that these two populations may view their obligations to extended family members differently, given the inherent broader familial impact of inherited conditions versus that of typically isolated pediatric cancers. 21,22 We explore themes focused on parental attitudes toward (i) sharing of target and incidental findings discovered in the course of pediatric genomic research; (ii) responsibilities toward family members; (iii) acceptability of children participating in genomic research; Purpose: We describe parental attitudes toward the return of targeted and incidental genomic research results in the setting of highrisk pediatric cancer and inherited childhood diseases. Methods:A validated 36-item questionnaire was mailed to participants in three large-scale genome research consortia examining attitudes toward receipt of genomic research results and the influence of certainty, severity, and onset of the condition, in addition to responsibilities to extended family and provision of results even after death of the proband. results:Of the 563 participants who were sent questionnaires, 362 (64%) responded. Most of them stated a positive right to receive results related to the target condition (97%) or to incidental findings (86%); no difference was found in results between participants with cancer and those with orphan diseases. Furthermore, 92% indicated that genomic research fo...

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“…8 In particular, parents' views on PGx testing should be better understood, especially since the effects of ADRs are more pronounced in children than in adults. 11 Plausibly, the acceptability of a concept may depend on people' s familiarity with the concept. 12 Indeed, among medical students, greater educational exposure was associated with more favorable opinions on diverse topics such as complementary alternative medicine, 13 geriatric psychiatry, 14 rural practice, 15 and palliative care.…”

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confidence: 99%

Public Perceptions of Pharmacogenetics

Zhang¹,

Carleton

Hayden

et al. 2014

Pediatrics

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BACKGROUND AND OBJECTIVES: Pharmacogenetics (PGx) promises to optimize patient response to therapy. However, the public’s acceptance of PGx is not well known, notably when this applies to children. Our objective was to explore perceptions of PGx testing among individuals, who differ from each other by either parental status or educational exposure to PGx, and to explore parents’ views between PGx testing for oneself and PGx testing for their children. METHODS: An exploratory survey was conducted among parents and other adults. Surveys P and C were completed by parents, survey NP by middle-aged nonparents, and survey MS by medical students. RESULTS: Proper explanation before PGx testing appeared to be the most important issue to the respondents (eg, P = 1.55 × 10−38 for survey NP). Respondents who were more knowledgeable about PGx were also more comfortable with PGx testing (eg, P = 2.53 × 10−7 in case of mild disease). When PGx testing was for one’s child, parents valued their own understanding more than their child’s assent (P = 1.57 × 10−17). CONCLUSIONS: The acceptability of PGx testing, either for oneself or for one’s child, seemed to depend on baseline PGx knowledge, but not on parenthood.

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Researchers’ Perceptions of the Ethical Implications of Pharmacogenomics Research with Children

Cited by 31 publications

References 60 publications

A Review of Consent Practices and Perspectives for Pharmacogenetic testing

A Review of Consent Practices and Perspectives for Pharmacogenetic testing

Attitudes of parents toward the return of targeted and incidental genomic research findings in children

Public Perceptions of Pharmacogenetics

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