Patients' Attitudes Towards the Return of Incidental Findings After Research with Residual Tissue: A Mixed Methods Study

VermeulenEric,; Rebers, Susanne; AaronsonNeil, K; BrandenburgAlexander, P; LeeuwenFlora, E van; SchmidtMarjanka, K

doi:10.1089/gtmb.2017.0222

Cited by 5 publications

(2 citation statements)

References 55 publications

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“…Parents also want to know their child’s carrier status so they can prepare their children for the future [ 95 ]. A Dutch study conducted 673 surveys and 146 interviews with patients [ 90 ]. They found that participants wanted to receive UF for curable (92%) and incurable conditions (76%), and also where the risk of developing the condition was high (84%) and low (79%) [ 90 ].…”

Section: Views On Return Of Unsolicited and Secondary Findingsmentioning

confidence: 99%

Return of individual research results from genomic research: A systematic review of stakeholder perspectives

et al. 2021

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Despite the plethora of empirical studies conducted to date, debate continues about whether and to what extent results should be returned to participants of genomic research. We aimed to systematically review the empirical literature exploring stakeholders’ perspectives on return of individual research results (IRR) from genomic research. We examined preferences for receiving or willingness to return IRR, and experiences with either receiving or returning them. The systematic searches were conducted across five major databases in August 2018 and repeated in April 2020, and included studies reporting findings from primary research regardless of method (quantitative, qualitative, mixed). Articles that related to the clinical setting were excluded. Our search identified 221 articles that met our search criteria. This included 118 quantitative, 69 qualitative and 34 mixed methods studies. These articles included a total number of 118,874 stakeholders with research participants (85,270/72%) and members of the general public (40,967/35%) being the largest groups represented. The articles spanned at least 22 different countries with most (144/65%) being from the USA. Most (76%) discussed clinical research projects, rather than biobanks. More than half (58%) gauged views that were hypothetical. We found overwhelming evidence of high interest in return of IRR from potential and actual genomic research participants. There is also a general willingness to provide such results by researchers and health professionals, although they tend to adopt a more cautious stance. While all results are desired to some degree, those that have the potential to change clinical management are generally prioritized by all stakeholders. Professional stakeholders appear more willing to return results that are reliable and clinically relevant than those that are less reliable and lack clinical relevance. The lack of evidence for significant enduring psychological harm and the clear benefits to some research participants suggest that researchers should be returning actionable IRRs to participants.

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Section: Views On Return Of Unsolicited and Secondary Findingsmentioning

confidence: 99%

Return of individual research results from genomic research: A systematic review of stakeholder perspectives

et al. 2021

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“…Our study is the first to demonstrate in a large population of both curative and palliative patients with cancer that the majority of patients want to learn about a wide range of genetic risk information, consistent with the enthusiasm for receiving genetic findings among the general public and with smaller studies among patients with cancer. [23][24][25] It is also remarkable that the interest in learning about the different categories of UFs is equally high among curative and advanced-stage patients. Apparently, life expectancy is not a decisive factor for patients in embracing genetic information.…”

Section: Preferences For Receiving Genetic Informationmentioning

confidence: 99%

Preferences to receive unsolicited findings of germline genome sequencing in a large population of patients with cancer

et al. 2020

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BackgroundIn precision medicine, somatic and germline DNA sequencing are essential to make genome-guided treatment decisions in patients with cancer. However, it can also uncover unsolicited findings (UFs) in germline DNA that could have a substantial impact on the lives of patients and their relatives. It is therefore critical to understand the preferences of patients with cancer concerning UFs derived from whole-exome (WES) or whole-genome sequencing (WGS).MethodsIn a quantitative multicentre study, adult patients with cancer (any stage and origin of disease) were surveyed through a digital questionnaire based on previous semi-structured interviews. Background knowledge was provided by showing two videos, introducing basic concepts of genetics and general information about different categories of UFs (actionable, non-actionable, reproductive significance, unknown significance).ResultsIn total 1072 patients were included of whom 701 participants completed the whole questionnaire. Overall, 686 (85.1%) participants wanted to be informed about UFs in general. After introduction of four UFs categories, 113 participants (14.8%) changed their answer: 718 (94.2%) participants opted for actionable variants, 537 (72.4%) for non-actionable variants, 635 (87.0%) participants for UFs of reproductive significance and 521 (71.8%) for UFs of unknown significance. Men were more interested in receiving certain UFs than women: non-actionable: OR 3.32; 95% CI 2.05 to 5.37, reproductive significance: OR 1.97; 95% CI 1.05 to 3.67 and unknown significance: OR 2.00; 95% CI 1.25 to 3.21. In total, 244 (33%) participants conceded family members to have access to their UFs while still alive. 603 (82%) participants agreed to information being shared with relatives, after they would pass away.ConclusionOur study showed that the vast majority of patients with cancer desires to receive all UFs of genome testing, although a substantial minority does not wish to receive non-actionable findings. Incorporation of categories in informed consent procedures supports patients in making informed decisions on UFs.

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Psychological predictors of cancer patients' and their relatives’ attitudes towards the return of genomic sequencing results

Meiser

Butow

Davies

et al. 2022

European Journal of Medical Genetics

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Patients' Attitudes Towards the Return of Incidental Findings After Research with Residual Tissue: A Mixed Methods Study

Abstract: We conclude that, while the majority of patients want to be informed about incidental findings, they also recognize that this may be difficult.

Cited by 5 publications

References 55 publications

Return of individual research results from genomic research: A systematic review of stakeholder perspectives

Return of individual research results from genomic research: A systematic review of stakeholder perspectives

Preferences to receive unsolicited findings of germline genome sequencing in a large population of patients with cancer

Psychological predictors of cancer patients' and their relatives’ attitudes towards the return of genomic sequencing results

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