Genomic Contextualism: Shifting the Rhetoric of Genetic Exceptionalism

Garrison, Nanibaa’ A.; Brothers, Kyle B.; Goldenberg, Aaron J.; Lynch, John

doi:10.1080/15265161.2018.1544304

Cited by 59 publications

(40 citation statements)

References 50 publications

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“…There have been opposing views on how to consider genetic information: one was that genetic information differed from other kinds of health information, coined "genetic exceptionalism" 41 . Recently, the view of "genomic contextualism" 42 argues that genetic/genomic tests are similar in some ways to other medical tests, but have some distinct characteristics that require a careful approach to the data with determination of the ethical issues and policy considerations. The adolescent population is worthy of special consideration as adolescents may have the decisional capacity (by 12 years age) 43 to be entitled to confidentiality equal that of an adult with respect to some health information (such as mental health, substance use or abuse, sex, and reproduction).…”

Section: Ethical Considerationsmentioning

confidence: 99%

Ethical Considerations on Pediatric Genetic Testing Results in Electronic Health Records

et al. 2020

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Background Advances in technology and access to expanded genetic testing have resulted in more children and adolescents receiving genetic testing for diagnostic and prognostic purposes. With increased adoption of the electronic health record (EHR), genetic testing is increasingly resulted in the EHR. However, this leads to challenges in both storage and disclosure of genetic results, particularly when parental results are combined with child genetic results. Privacy and Ethical Considerations Accidental disclosure and erroneous documentation of genetic results can occur due to the nature of their presentation in the EHR and documentation processes by clinicians. Genetic information is both sensitive and identifying, and requires a considered approach to both timing and extent of disclosure to families and access to clinicians. Methods This article uses an interdisciplinary approach to explore ethical issues surrounding privacy, confidentiality of genetic data, and access to genetic results by health care providers and family members, and provides suggestions in a stakeholder format for best practices on this topic for clinicians and informaticians. Suggestions are made for clinicians on documenting and accessing genetic information in the EHR, and on collaborating with genetics specialists and disclosure of genetic results to families. Additional considerations for families including ethics around results of adolescents and special scenarios for blended families and foster minors are also provided. Finally, administrators and informaticians are provided best practices on both institutional processes and EHR architecture, including security and access control, with emphasis on the minimum necessary paradigm and parent/patient engagement and control of the use and disclosure of data. Conclusion The authors hope that these best practices energize specialty societies to craft practice guidelines on genetic information management in the EHR with interdisciplinary input that addresses all stakeholder needs.

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Section: Ethical Considerationsmentioning

confidence: 99%

Ethical Considerations on Pediatric Genetic Testing Results in Electronic Health Records

et al. 2020

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“…One possible explanation for persistence of thinking that genomic information has an exceptional capacity to do harm is that it continues to be fed by several other similarly common beliefs that have both genomic and social underpinnings and that tend to encourage deterministic understanding of genomic information . As Murray expressed, exceptionalist thinking displays a “vicious circularity” among the various isms, and no single step in the conceptual cascade can be used to interrupt the cycle of isms.…”

Section: Breaking the Cycle Of Genomic Isms: Mission Impossible?mentioning

confidence: 99%

Genomic Essentialism: Its Provenance and Trajectory as an Anticipatory Ethical Concern

Sabatello¹,

Juengst²

2019

Hastings Center Report

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Since the inception of large‐scale human genome research, there has been much caution about the risks of exacerbating a number of socially dangerous attitudes linked to human genetics. These attitudes are usually labeled with one of a family of genetic or genomic “isms” or “ations” such as “genetic essentialism,” “genetic determinism,” “genetic reductionism,” “geneticization,” “genetic stigmatization,” and “genetic discrimination.” The psychosocial processes these terms refer to are taken to exacerbate several ills that are similarly labeled, from medical racism and psychological fatalism to economic exploitation and social exclusion. But as genomic information becomes more familiar in clinical and research settings as well as other life activities, do we need to continue to worry so much about this family of attitudes and their impact on existing problems? In genomics, the underlying anxiety has been that disclosure of genomic information will trigger a series of (seemingly unavoidable) negative responses that will affect individuals, their families, and their communities at large. The fundamental social challenges that hyperbolic genomic messaging, low genomic literacy, and “folk biology” help sustain remain to be addressed. If we hope to break the cycle of genomic isms and ations, we will have to get better at resisting overinterpretations of the relevance that genomics has for people’s future potentials, ancestral vulnerabilities, community memberships, and ethnic affiliations.

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“…This form of 'genetic exceptionalism', however, has also been contested [19]. First, on any plausible understanding of personal identity, many factors other than genes determine who a person 'is' [20].…”

Section: Genetics As a Special Casementioning

confidence: 99%

Rethinking the ethical principles of genomic medicine services

et al. 2019

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Clinical genome and exome sequencing is currently used in only a small fraction of patients, yet large scale genomic initiatives are becoming more embedded in clinical services. This paper examines the ethical principles that should guide regulatory processes regarding consent and data sharing in this context. We argue that a genomic dataset administered by the health system carries substantial societal benefits, and that the collective nature of this initiative means that at least those patients who benefit from genome sequencing have an ethical obligation to share their health information. This obligation is grounded in considerations of fairness. Furthermore, we argue that the use of genomic data for the advancement of medical knowledge should be permitted without explicit consent and that international and other bodies should be granted access to these data, provided certain conditions are satisfied.

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Genomic Contextualism: Shifting the Rhetoric of Genetic Exceptionalism

Cited by 59 publications

References 50 publications

Ethical Considerations on Pediatric Genetic Testing Results in Electronic Health Records

Ethical Considerations on Pediatric Genetic Testing Results in Electronic Health Records

Genomic Essentialism: Its Provenance and Trajectory as an Anticipatory Ethical Concern

Rethinking the ethical principles of genomic medicine services

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