Genetic Counseling and the Ethical Issues Around Direct to Consumer Genetic Testing

2012 ◽  
Vol 21 (3) ◽  
pp. 367-373 ◽  
Author(s):  
Alice K. Hawkins ◽  
Anita Ho
Keyword(s):  
Genetic Counseling ◽  
Genetic Testing ◽  
Ethical Issues ◽  
Direct To Consumer

scholarly journals Epistemic and ethical considerations in the direct-to-consumer health and ancestry genetic testing process

2021 ◽  
Vol 20 (1) ◽  
Author(s):  
Katherine Huerne
Keyword(s):  
Genetic Testing ◽  
Quantitative Methods ◽  
Ethical Issues ◽  
Social Issues ◽  
Clear Understanding ◽  
Feminist Ethics ◽  
Ethical Considerations ◽  
Ethical Implications ◽  
Direct To Consumer ◽  
The Cost

Background: Direct-to-consumer genetic testing (DTC-GT) is a popular and fast-growing field within the healthcare industry. Consumers often pursue DTC-GT without a clear understanding of its epistemic and medical limitations. This report will present the current state of DTC-GT technology, and highlight the ethical, legal and social issues of DTC-GT. Methods: Quantitative methods such as systematic reviews were used to evaluate the field of DTC-GT. Experimental data was taken from randomized control trials and case studies of 23andMe. Qualitative methods such as newspaper articles and surveys were also used. Relevant policies and regulatory information were analyzed in the context of 23andMe. Broader ethical issues are analyzed from the social disability model and feminist ethics frameworks. Results: Several aspects of direct-to-consumer genetic testing are outlined: (i) regulatory and legal distinctions of DTC-GT that separate its use from conventional genetic testing, (ii) epistemic issues of the genetic testing process within the direct-to-consumer context, and (iii) ethical considerations of DTC-GT in regard to genetic health and genetic ancestry. Conclusion: This report does not take a position for or against the use of DTC-GT; rather, it highlights the key ethical issues often missed in the DTC-GT process. There is no perfect method for understanding genetic health and race. DTC-GT offer consumers the ease and power of taking genetic data ‘in their own hands’, at the cost of exacerbating geneticization and race essentialism. Until further work is done to address the epistemic, regulatory and legal issues, ethical implications of DTC-GT usage will continue to exist.

A Crossroads in Genetic Counseling and Ethics

1998 ◽  
Vol 7 (1) ◽  
pp. 97-100 ◽  
Author(s):  
GLENN McGEE ◽  
MONICA ARRUDA
Keyword(s):  
Genetic Counseling ◽  
Genetic Testing ◽  
Ethical Issues ◽  
Training Programs ◽  
Genome Project ◽  
Genetic Counselors ◽  
University Of Pennsylvania ◽  
Predictive Values ◽  
Counseling Training ◽  
Task Forces

Genetic counselors are on the front lines of the genetic revolution, presented with tests of varying predictive values and reliability, unfair testing distribution mechanisms, tests for conditions where no treatment exists, and companies that oversell the usefulness of their tests to physicians and nurses. Many scholars, both genetic testing task forces as well as the newly formed National Bioethics Advisory Commission, have all noted that genetic counseling programs and services are critical for adequate genetic testing. At the same time, in our own work at the University of Pennsylvania we have encountered many requests for new materials for training genetic counselors in ethics and providing ethics resources for genetic counseling. One of us has noted elsewhere that it is crucial that resources from the Human Genome Project, the Centers for Disease Control, and other public agencies be devoted to providing better resources for genetic counselors facing difficult ethical issues. Although the American Board of Genetic Counseling requires that training programs include some formal coursework in ethics, many wonder whether enough is being done to prepare genetic counselors for an ever-tougher job, and in particular there has been much concern expressed about whether “nondirectiveness” is an outmoded ideal that hampers this profession as it attempts to grow and identify the value of its practice. On the basis of many comments to us by genetic counselors and on the basis of our review of the current literature, we hypothesized that accredited genetic counseling training programs are poised at the turn of the century to begin planning a new approach to teaching the philosophy of genetic counseling, one that integrates philosophical, theoretical, and ethical training throughout the curriculum in genetic counseling.

Direct-to-consumer health genetic testing services: What commercial strategies for which socio-ethical issues?

2013 ◽  
Vol 22 (1) ◽  
pp. 75-87 ◽  
Author(s):  
Pascal Ducournau ◽  
Pierre-Antoine Gourraud ◽  
Emmanuelle Rial-Sebbag ◽  
Anne Cambon-Thomsen ◽  
Alexandre Bulle
Keyword(s):  
Genetic Testing ◽  
Ethical Issues ◽  
Consumer Health ◽  
Direct To Consumer

scholarly journals Evaluating Web-Based Direct-to-Consumer Genetic Tests for Cancer Susceptibility

2020 ◽  
pp. 161-169
Author(s):  
Madison K. Kilbride ◽  
Angela R. Bradbury
Keyword(s):  
Genetic Counseling ◽  
Genetic Testing ◽  
Web Sites ◽  
Clinical Laboratory ◽  
Cancer Susceptibility ◽  
Molecular Technique ◽  
Genetic Tests ◽  
Comprehensive Overview ◽  
Direct To Consumer ◽  
Informed Decisions

PURPOSE Recent years have seen direct-to-consumer (DTC) genetic testing for cancer susceptibility change dramatically. For one, a new model now dominates the market where tests are advertised to consumers but ordered by physicians. For another, many of today’s tests are distinguished from earlier DTC offerings for cancer susceptibility by their scope and potential clinical significance. This review provides a comprehensive overview of available DTC genetic tests for cancer susceptibility and identifies aspects of the DTC testing process that could affect consumers’ ability to make informed decisions about testing and understand their results. METHODS First, we provide an overview of each DTC genetic test for cancer susceptibility that includes information about cost; who orders it; whether variants of uncertain significance are returned; availability of genetic counseling; intended users; management of variant reclassifications; whether it is characterized as diagnostic, actionable, and clinically valid; molecular technique used; and Clinical Laboratory Improvement Amendments/College of American Pathologists status. Second, we identify six aspects of the testing process that could affect consumers’ ability to make informed decisions about testing and interpret their results: How companies use certain terms (eg, medical grade or clinical grade); how companies use consumers’ health information during the ordering process; the extent of genetic counseling provided by companies; companies’ procedures for returning results; the role of company-provided ordering physicians; and companies’ procedures for communicating variant reclassifications. RESULTS On the basis of our review of companies’ Web sites, we believe that consumers would benefit from more information about these aspects of testing. CONCLUSION Providing this information would help consumers make informed decisions about whether to use a particular DTC genetic testing service and, should they choose to pursue testing, understand the implications and limitations of their results.

scholarly journals Utilization of Genetic Counseling after Direct-to-Consumer Genetic Testing: Findings from the Impact of Personal Genomics (PGen) Study

2017 ◽  
Vol 26 (6) ◽  
pp. 1270-1279 ◽  
Author(s):  
Diane R Koeller ◽  
◽  
Wendy R Uhlmann ◽  
Deanna Alexis Carere ◽  
Robert C Green ◽  
...  
Keyword(s):  
Genetic Counseling ◽  
Genetic Testing ◽  
Personal Genomics ◽  
Direct To Consumer ◽  
The Impact

Applying Ethical Theories to Genetic Counseling Practice

2019 ◽  
pp. 89-110
Author(s):  
Barbara B. Biesecker ◽  
Kathryn F. Peters ◽  
Robert Resta
Keyword(s):  
Genetic Counseling ◽  
Genetic Testing ◽  
Ethical Issues ◽  
Brca Mutation ◽  
Ethical Framework ◽  
Feminist Ethics ◽  
Ethical Frameworks ◽  
Testing Technology ◽  
Ethical Approaches ◽  
The Common

Genetic counseling engenders thorny ethical issues that expand as genetic testing technology continues to evolve. Genetic counselors are frequently faced with bioethical dilemmas that, by their very nature, are not easily resolved. This chapter reviews some of the common ethical frameworks for considering ethically complex situations—deontology, casuistry, principilism, and feminist ethics. These ethical approaches are illustrated by applying them to a case of a mother who is a BRCA mutation carrier and is trying to make a decision about genetic testing for her fourteen-year-old daughter. No one ethical framework will be applicable to all genetic counseling dilemmas, but familiarity with these different approaches can help counselors better understand the value of each approach in assessing a variety of clinical situations. A model is presented showing how to manage, think about, and think through ethical dilemmas.

Genetic counseling following direct‐to consumer genetic testing: Consumer perspectives

2020 ◽  
Author(s):  
Tessa Marzulla ◽  
J. Scott Roberts ◽  
Raymond DeVries ◽  
Diane R. Koeller ◽  
Robert C. Green ◽  
...  
Keyword(s):  
Genetic Counseling ◽  
Genetic Testing ◽  
Direct To Consumer ◽  
Consumer Perspectives

scholarly journals Direct-to-consumer genetic testing: where and how does genetic counseling fit?

2017 ◽  
Vol 14 (3) ◽  
pp. 249-257 ◽  
Author(s):  
Anna Middleton ◽  
Álvaro Mendes ◽  
Caroline M Benjamin ◽  
Heidi Carmen Howard
Keyword(s):  
Genetic Counseling ◽  
Genetic Testing ◽  
Direct To Consumer

Experiences of individuals receiving “Not Parent Expected” (NPE) results through direct-to-consumer genetic testing

2021 ◽  
Vol 132 ◽  
pp. S289
Author(s):  
Julia Becker ◽  
Janey Youngblom ◽  
Brianne Kirkpatrick ◽  
Liane Abrams
Keyword(s):  
Genetic Testing ◽  
Direct To Consumer
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