What Is the Psychosocial Impact of Providing Genetic and Genomic Health Information to Individuals? <i>An Overview of Systematic Reviews</i>

Wade, Christopher H.

doi:10.1002/hast.1021

Cited by 34 publications

(32 citation statements)

References 16 publications

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“…The psychological impact in these 2 diseases, however, varies markedly. [38][39][40] It is thus difficult to deduce from these diseases how individuals will experience risk disclosure of α-synucleinopathies. Although a recent study suggests that patients with Parkinson's disease are skeptical toward early risk disclosure, 32 the psychological impact of risk disclosure to patients or research participants with RBD remains unknown.…”

Section: Key Remaining Gaps In Knowledgementioning

confidence: 99%

“…The impact can only be extrapolated from different settings, such as genetic testing for Alzheimer's disease or Huntington's disease. The psychological impact in these 2 diseases, however, varies markedly 38‐40 . It is thus difficult to deduce from these diseases how individuals will experience risk disclosure of α‐synucleinopathies.…”

Section: Key Remaining Gaps In Knowledgementioning

confidence: 99%

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Ethical Considerations in Screening for Rapid Eye Movement Sleep Behavior Disorder in the General Population

et al. 2020

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A BS TRACT: Clinical studies have shown that up to 90% of patients with idiopathic rapid eye movement sleep behavior disorder (RBD) will eventually be diagnosed with a clinical α-synucleinopathy. Because of this high conversion rate, screening for RBD is often performed to identify eligible participants for studies aimed at elucidating the prodromal phase of α-synucleinopathies. However, screening for RBD, especially in the general population, raises many ethical dilemmas. In light of the existing ethical literature and our experience in establishing a screening approach for RBD in the Rotterdam Study, we discuss ethical dilemmas when screening for RBD in population-based studies. We conclude that informing study participants about the reason for invitation and the possible trajectory that lies ahead when participating is essential. However, participants should not be troubled unnecessarily by giving them detailed information about possible diagnoses or associated disease risks.

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Section: Key Remaining Gaps In Knowledgementioning

confidence: 99%

Section: Key Remaining Gaps In Knowledgementioning

confidence: 99%

Ethical Considerations in Screening for Rapid Eye Movement Sleep Behavior Disorder in the General Population

et al. 2020

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“…Like Roberts, Hamilton and Robson, and Biesecker, Wade emphasizes that, on average, when people receive genetic information of relatively certain significance or they have requested access to that information, any negative psychosocial impacts are minor and temporary. As he puts it, “[T]he quantitative findings in the systematic reviews do not appear to support the idea that there are acute, statistically significant, and sustained adverse psychological impacts of genetic and genomic testing.”21…”

Section: Painting a Large Swath Of A Complex Evolving Landscapementioning

confidence: 99%

On What We Have Learned and Still Need to Learn about the Psychosocial Impacts of Genetic Testing

Parens¹,

Appelbaum²

2019

Hastings Center Report

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Since the start of the program to investigate the ethical, legal, and social implications (ELSI) of the Human Genome Project in 1990, many ELSI scholars have maintained that genetic testing should be used with caution because of the potential for negative psychosocial effects associated with receiving genetic information. More recently, though, some ELSI scholars have produced evidence suggesting that the original ELSI concerns were unfounded, exaggerated, or, at a minimum, misdirected. At least in the contexts that have been most studied, large negative impacts have not been found in the vast majority of people studied. What might explain the discrepancy between the original hypothesized outcomes and the growing impression that large negative effects appear to be few and far between? And if the original predictions of large negative psychosocial effects were simply wrong, is it time for ELSI researchers to move on? Should genetic testing be routinized, and would it be appropriate to relax or abandon the practice of engaging patients in a process of detailed informed consent before they receive genetic information? To confront those questions, we convened a conference entitled “Looking for the Psychosocial Impacts of Genomic Information” to review what is known about the negative impacts of genetic information on a variety of populations and in multiple medical and social contexts, to explore the implications of the findings, and to consider whether future research might benefit from different methods than have been used to date.

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“…The vast majority of research on psychological implications of cancer genetic testing has been conducted in this context of serial testing for mutations in high‐penetrance genes (see Christopher Wade’s essay in this special report). In general, the reported negative emotional effects of undergoing predictive genetic testing in terms of outcomes such as anxiety, depression, worry, and distress have been limited .…”

Section: Psychosocial Effects Of Serial Testing For High‐penetrance Cmentioning

confidence: 99%

Psychosocial Effects of Multigene Panel Testing in the Context of Cancer Genomics

Hamilton¹

2019

Hastings Center Report

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In recent years, with both the development of next‐generation sequencing approaches and the Supreme Court decision invalidating gene patents, declining costs have contributed to the emergence of a new model of hereditary cancer genetic testing. Multigene panel testing (or multiplex testing) involves using next‐generation sequencing technology to determine the sequence of multiple cancer‐susceptibility genes. In addition to high‐penetrance cancer‐susceptibility genes, multigene panels frequently include genes that are less robustly associated with cancer predisposition. Scientific understanding about associations between many specific moderate‐penetrance gene variants and cancer risks is incomplete. The emergence of multigene panel tests has created unique challenges that may have meaningful psychosocial implications. Contrasted with the serial testing process, wherein patients consider the personal and clinical implications of each evaluated gene, with multigene panel testing, patients provide broad consent to whichever genes are included in a particular panel and then, after the test, receive in‐depth genetic counseling to clarify the distinct implications of their specific results. Consequently, patients undergoing multigene panel testing may have a less nuanced understanding of the test and its implications, and they may have fewer opportunities to self‐select against the receipt of particular types of genetic‐risk information. Evidence is conflicting regarding the emotional effects of this testing.

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What Is the Psychosocial Impact of Providing Genetic and Genomic Health Information to Individuals? An Overview of Systematic Reviews

Cited by 34 publications

References 16 publications

Ethical Considerations in Screening for Rapid Eye Movement Sleep Behavior Disorder in the General Population

Ethical Considerations in Screening for Rapid Eye Movement Sleep Behavior Disorder in the General Population

On What We Have Learned and Still Need to Learn about the Psychosocial Impacts of Genetic Testing

Psychosocial Effects of Multigene Panel Testing in the Context of Cancer Genomics

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