Critical social theory approach to disclosure of genomic incidental findings

Bevan, Jeffrey; Senn-Reeves, Julia N; Inventor, Ben R; Greiner, Shawna; Mayer, Karen M.; Rivard, Mary T; Hamilton, Rebekah

doi:10.1177/0969733011433924

Cited by 8 publications

(10 citation statements)

References 32 publications

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“…The reasons cited against the disclosure of IF tend to focus on IF that are unlikely to result in net benefit to the patient and may cause psychological harm (Ali-Khan et al 2009;Bevan et al 2012), such as the disclosure of non-paternity or variants of unknown significance ). An additional reason not to disclose IF is the time and resources required to interpret, communicate and follow-up with IF, which could overwhelm the capacity of researchers and clinicians (Kohane et al 2006;Tabor and Cho 2007;Ali-Khan et al 2009).…”

Section: What Is An Incidental Finding?mentioning

confidence: 99%

Incidental Findings from Clinical Genome‐Wide Sequencing: A Review

Lohn

Adam

Birch

et al. 2013

Journal of Genetic Counseling

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There are several unresolved challenges associated with the clinical application of genome-wide sequencing technologies. One of the most discussed issues is incidental findings (IF), which are defined as discoveries made as a result of genetic testing that are unrelated to the indication for the test. The discussion surrounding IF began in the context of research, which we have used to frame consideration of IF in the clinical context. There is growing consensus that analytically valid and medically actionable IF should be offered to patients, but whether and to what extent clinicians should disclose other kinds of IF is debated. While others have systematically reviewed the literature concerning genetic IF, previous reviews focus on ethical and research-related issues and do not consider the implications for the genetic counseling profession specifically. This review discusses the practical considerations, ethical concerns and genetic counseling issues related to IF, with a particular focus on clinical genome-wide sequencing. To date, the bulk of the literature with respect to IF in the clinical context consists of commentaries, reviews and case reports. There is a need for more empirical studies to provide a foundation for institutional protocols and evidence-based clinical practice standards.

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Section: What Is An Incidental Finding?mentioning

confidence: 99%

Incidental Findings from Clinical Genome‐Wide Sequencing: A Review

Lohn

Adam

Birch

et al. 2013

Journal of Genetic Counseling

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“…behavioral changes benefitting health [ 10 ], and negative consequences, e.g. psychological harm [ 11 , 12 ], of a disclosure of incidental findings have been discussed. Furthermore, the ongoing debate tries to formulate different rules and procedures for contexts with different goals (e.g., research vs. clinical) [ 13 ].…”

Section: Introductionmentioning

confidence: 99%

Genomic information and a person’s right not to know: A closer look at variations in hypothetical informational preferences in a German sample

et al. 2018

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In clinical practice and in research, there is an ongoing debate on how to return incidental and secondary findings of genetic tests to patients and research participants. Previous investigations have found that most of the people most of the time are in favor of full disclosure of results. Yet, the option to reject disclosure, based on the so-called right not to know, can be valuable especially for some vulnerable subgroups of recipients. In the present study we investigated variations in informational preferences in the context of genetic testing in a large and diverse German sample. This survey examined health care professionals, patients, participants of genetic counseling sessions and members of the general population (N = 518). Survey participants were assessed regarding their openness to learning about findings under various hypothetical scenarios, as well as their attitudes about the doctor-patient-relationship in a disclosure situation and about informational transfer to third parties. While the majority of participants wanted to learn about their findings, the extent of support of disclosure varied with features of the hypothetical diagnostic scenarios (e.g., controllability of disease; abstract vs. concrete scenario description) and demographic characteristics of the subjects. For example, subjects with higher levels of education were more selective with regards to the kind of information they want to receive than those with lower levels of education. We discuss implications of these findings for the debate about the right not to know and for the clinical practice of informed consent procedures.

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“…Even though the purpose of ELSI was to proactively address the issues from genetic and genomic studies, biobanks practices are often included in the discussion, specifi cally related to broad prospective consent and return of signifi cant or incidental results [ 17 ]. These ethical dilemmas addressed by the ELSI program pose novel challenges for nurse scientists, research nurses, and clinical practice nurses conducting genomic and genetic biobanking research [ 18 ]. Although the biospecimens stored in a majority of biobanks are de-identifi ed to protect participant privacy, genetics and genomics data contain unique identifi ers for each person.…”

Section: Ethical Genetic and Genomic Considerations For Nursing Reseamentioning

confidence: 98%

Nursing and Biobanking

Sanner

Nomie

2015

Advances in Experimental Medicine and Biology

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Nurses are a pivotal component of the translational research movement and apply scientific discoveries to the healthcare and clinical practice fields. Biobanking is also an important factor in furthering translational research by providing biospecimens and related clinical data to the research community. The effectiveness of any biobanking effort necessitates the enrollment of large numbers of diverse participants, which signifies a need for the nursing profession to secure the knowledge necessary to impact biobanking practices and to promote participant advocacy. In addition, biobanks provide the volume, variety, veracity, and velocity of data that can address the challenges of nursing research. Nurse scientists, research nurse coordinators and clinical research and practice nurses must be informed about the various benefits and risks associated with biobanking in addition to ethical issues surrounding informed consent, participant privacy, and the release of research results. Ultimately, nurses need to possess competencies to facilitate biobanking practices both at the research bench and at the point of care.

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Critical social theory approach to disclosure of genomic incidental findings

Cited by 8 publications

References 32 publications

Incidental Findings from Clinical Genome‐Wide Sequencing: A Review

Incidental Findings from Clinical Genome‐Wide Sequencing: A Review

Genomic information and a person’s right not to know: A closer look at variations in hypothetical informational preferences in a German sample

Nursing and Biobanking

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