Conflicts of interest in genetic counseling: acknowledging and accepting

Stoll, Katie; Mackison, Amanda; Allyse, Megan; Michie, Marsha

doi:10.1038/gim.2016.216

Cited by 18 publications

(8 citation statements)

References 7 publications

Supporting

Mentioning

Contrasting

Order By: Relevance

“…This can create conflicts of interest in situations where practice guidelines and/or patient preferences are discordant with the business interests of a laboratory. While policy solutions to address these conflicts of interest are still being considered (Stoll et al 2017), it remains generally understood that genetic counsellors can and should disclose any potential conflicts of interest to the patients they counsel. Although it may be tempting to view respect for patient autonomy as an additional strategy for mitigating conflicts of interest, we believe that it is inadequate to this task and can in fact obscure them.…”

Section: Genetic Counselling In the Genomic Eramentioning

confidence: 99%

Re-examining the Ethics of Genetic Counselling in the Genomic Era

2020

View full text Add to dashboard Cite

Respect for patient autonomy has served as the dominant ethical principle of genetic counselling, but as we move into a genomic era, it is time to actively reexamine the role that this principle plays in genetic counselling practice. In this paper, we argue that the field of genetic counselling should move away from its emphasis on patient autonomy and toward the incorporation of a more balanced set of principles that allows counsellors to offer clear guidance about how best to obtain or use genetic information. We begin with a brief history of how respect for patient autonomy gained such emphasis in the field and how it has taken on various manifestations over time, including the problematic concept of nondirectiveness. After acknowledging the field's preliminary move away from nondirectiveness, we turn to a series of arguments about why the continued dominance of patient autonomy has become untenable given the arrival of the genomic era. To conclude, we describe how a more complete set of bioethical principles can be adapted and used by genetic counsellors to strengthen their practice without undermining patient autonomy.

show abstract

Section: Genetic Counselling In the Genomic Eramentioning

confidence: 99%

Re-examining the Ethics of Genetic Counselling in the Genomic Era

2020

View full text Add to dashboard Cite

show abstract

“…However, a challenge with this model is that genetic counseling, as a stand‐alone service that should be valued and paid for, is hidden because the cost is bundled into the price of testing. Genetic counselors delivering patient services through testing laboratories may hinder efforts for recognition as independent service providers, and raises potential for conflict of interest when a genetic counselor is promoting the genetic tests offered by the laboratory that might not align with the needs of the provider and patient (Stoll, Mackison, Allyse, & Michie, ).…”

Section: Future Directions: Challenges and Opportunitiesmentioning

confidence: 99%

The past, present and future of service delivery in genetic counseling: Keeping up in the era of precision medicine

Stoll¹,

Kubendran²,

Cohen

2018

American J of Med Genetics Pt C

162

144

View full text Add to dashboard Cite

Precision medicine aims to approach disease treatment and prevention with consideration of the variability in genes, environment, and lifestyle for each person. This focus on the individual is also key to the practice of genetic counseling, whereby foundational professional values prioritize informed and autonomous patient decisions regarding their genetic health. Genetic counselors are ideally suited to help realize the goals of the precision medicine. However, a limited genetic counseling workforce at a time in which there is a rapidly growing need for services is challenging the balance of supply and demand. This article provides historical context to better understand what has informed traditional models of genetic counseling and considers some of the current forces that require genetic counselors to adapt their practice. New service delivery models can improve access to genetic healthcare by overcoming geographical barriers, allowing genetic counselors to see a higher volume of patients and supporting other healthcare providers to better provide genetic services to meet the needs of their patients. Approaches to genetic counseling service delivery are considered with a forward focus to the challenges and opportunities that lie ahead for genetic counselors in this age of precision health.

show abstract

“…Since the 1990s, a growing number of genetic counselors have taken jobs in industry, where many of them provide direct patient care via telemedicine ('National Society of Genetic Counselors: NSGC Professional Status Survey', n.d.). These new kinds of counseling relationships have raised questions about conflicts of interest (Stoll, Mackison, Allyse, & Michie, ). In addition, a new class of so‐called ‘consumer‐initiated’ testing has become available, granting access to genetic testing with indirect or minimal involvement of a healthcare provider (Ramos & Weissman, ).…”

Section: An Adapted Ethical Frameworkmentioning

confidence: 99%

An ethical framework for genetic counseling in the genomic era

Jamal

Schupmann

Berkman

2019

Journal of Genetic Counseling

View full text Add to dashboard Cite

Since the inception of their profession, genetic counselors have helped patients and families adapt to varied circumstances and make decisions influenced by powerful emotions. In doing so, they have had to reconcile ethical principles with the diverse values of their patients. While this challenge is not unique in medicine, it has preoccupied genetic counselors disproportionately because such a large share of genetic counseling work involves nuanced discussions about reproductive choices and the impact of difference and disability on people's lives. Historically, the profession of genetic counseling has relied on 'nondirectiveness' to guide practice. Nondirectiveness has been defined in various ways: as a counseling method designed to be value-neutral (Caplan, 1993); as the prevention of coercion or persuasion in genetic counseling(Hamby & Biesecker, 2000); as a commitment not to impose one's own values on patients (Fine, 1993); and as a counseling strategy that supports autonomous decision-making (Bartels, LeRoy, McCarthy, & Caplan, 1997). The original ethical justification for practicing nondirectively was to respect individual patient autonomy, construed largely as non-interference in patient decision-making (Stern, 2009). This ethos grew out of a genuine respect for persons, particularly concerning reproductive choice and disability rights. The profession's emphasis on nondirectiveness has also been understood as an effort to distance genetic counseling from the morally fraught history of eugenics (Resta, 1997).

show abstract

Conflicts of interest in genetic counseling: acknowledging and accepting

Cited by 18 publications

References 7 publications

Re-examining the Ethics of Genetic Counselling in the Genomic Era

Re-examining the Ethics of Genetic Counselling in the Genomic Era

The past, present and future of service delivery in genetic counseling: Keeping up in the era of precision medicine

An ethical framework for genetic counseling in the genomic era

Contact Info

Product

Resources

About