Preparing for the Ethical Practice of Precision Medicine

2018 ◽  
Author(s):  
Megan A Allyse ◽  
Richard R Sharp
Keyword(s):  
Genetic Information ◽  
Information Overload ◽  
Social Issues ◽  
Genomic Medicine ◽  
Genetic Discrimination ◽  
Medical Genetics ◽  
Direct Access ◽  
Ethical Practice ◽  
Genetic Traits ◽  
Direct To Consumer

The role of genetics in medicine is changing quickly. New discoveries are rapidly bridging the chasm from bench to bedside, and in addition to medical advances, thousands of people are exploring their genetic traits and ancestry through direct-to-consumer companies. Staying abreast of these changes and their potential implications for patient care can be difficult. To help, we suggest several high-level points of reference regarding the current state of genomic medicine, with a focus on the ethical and social issues raised by these technologies. This review covers the rise of genomic medicine, information overload, direct access to genetic information, genetic discrimination, and informed consent. Tables list the American College of Medical Genetics and Genomics recommendations for reporting of incidental findings in clinical exome and genome sequencing, an excerpt from the Genetic Information Nondiscrimination Act, and genetics education resources for physicians. This review contains 3 tables, and 44 references. Key words: Genomic medicine, genetic medicine, medical genetics, genetic testing, direct-to-consumer genetics, genetic discrimination

Preparing for the Ethical Practice of Precision Medicine

2017 ◽  
Author(s):  
Megan A Allyse ◽  
Richard R Sharp
Keyword(s):  
Genetic Information ◽  
Information Overload ◽  
Social Issues ◽  
Genomic Medicine ◽  
Genetic Discrimination ◽  
Medical Genetics ◽  
Direct Access ◽  
Ethical Practice ◽  
Genetic Traits ◽  
Direct To Consumer

The role of genetics in medicine is changing quickly. New discoveries are rapidly bridging the chasm from bench to bedside, and in addition to medical advances, thousands of people are exploring their genetic traits and ancestry through direct-to-consumer companies. Staying abreast of these changes and their potential implications for patient care can be difficult. To help, we suggest several high-level points of reference regarding the current state of genomic medicine, with a focus on the ethical and social issues raised by these technologies. This review covers the rise of genomic medicine, information overload, direct access to genetic information, genetic discrimination, and informed consent. Tables list the American College of Medical Genetics and Genomics recommendations for reporting of incidental findings in clinical exome and genome sequencing, an excerpt from the Genetic Information Nondiscrimination Act, and genetics education resources for physicians. This review contains 3 tables, and 44 references. Key words: Genomic medicine, genetic medicine, medical genetics, genetic testing, direct-to-consumer genetics, genetic discrimination

9. Genetic Information

Medical Law ◽  
2019 ◽  
pp. 470-505
Author(s):  
Emily Jackson
Keyword(s):  
Genetic Testing ◽  
Genetic Information ◽  
Genetic Discrimination ◽  
Third Parties ◽  
Test Results ◽  
Genetic Privacy ◽  
Direct To Consumer ◽  
Genetic Test Results ◽  
Recent Developments ◽  
Dna Profiles

All books in this flagship series contain carefully selected substantial extracts from key cases, legislation, and academic debate, providing students with a stand-alone resource. This chapter examines the regulation of access to genetic information. It first discusses various third parties’ interests in genetic test results and DNA profiles, and the extent to which genetic privacy is protected by the law. The chapter then considers the issue of whether genetic discrimination should be treated in the same way as other illegitimate discriminatory practices and also discusses recent developments in the field of genetics, namely direct-to-consumer genetic testing and pharmacogenetics.

scholarly journals Η Διατροφογονιδιωματική και οι εμπορικά διαθέσιμες εφαρμογές της υπό το πρίσμα της Βιοηθικής

Bioethica ◽  
2017 ◽  
Vol 3 (1) ◽  
pp. 15
Author(s):  
Αναστασία Ιωάννα Ανεστίδου (Anastasia Ioanna Anestidou) ◽  
Τατιανή Σπυροπούλου (Tatiani Spyropoulou) ◽  
Μαρία Κουρκουτίδου (Maria Kourkoutidou) ◽  
Ευαγγελία Χατζοβούλου (Evangelia Chatzovoulou) ◽  
Χρήστος Βογιατζάκης (Christos Vogiatzakis) ◽  
...  
Keyword(s):  
Genetic Information ◽  
General Public ◽  
Information Access ◽  
Genetic Services ◽  
Direct Access ◽  
The Public ◽  
Direct To Consumer ◽  
Regulatory Aspects ◽  
Online Sales

Nutrigenomics, an emerging genomics field, aims to explore the interactions between nutrition and genes. Notably, nutrigenomics information and applications seem to be directly accessible to the public, partly due to advertising and direct-to-consumer online sales of nutrigenomics-related products and services. Nowadays, consumers have direct access to their genetic information. Access, however, does not guarantee interpretation and utility.This article, discusses the ethical and regulatory aspects of direct-to-consumer genetic services, focusing on nutrigenomic tests and the means they are promoted to the general public.

scholarly journals How do non-geneticist physicians deal with genetic tests? A qualitative analysis

2021 ◽  
Author(s):  
Laurent Pasquier ◽  
Guy Minguet ◽  
Sylvie Moisdon-Chataigner ◽  
Pascal Jarno ◽  
Philippe Denizeau ◽  
...  
Keyword(s):  
Genetic Testing ◽  
Social Issues ◽  
Clinical Skills ◽  
Rapid Development ◽  
Genomic Medicine ◽  
Genetic Tests ◽  
Simple Fact ◽  
Medical Specialties ◽  
Management Procedure ◽  
Testing Practices

AbstractGenetic testing is accepted to be a common practice in many medical specialties. These genetic tests raise issues such as respect for basic rights, how to handle results and uncertainty and how to balance concerns for medical confidentiality with the rights of third parties. Physicians need help to deal with the rapid development of genomic medicine as most of them have received no specific training on the medical, ethical, and social issues involved. Analyzing how these professionals integrate genetic testing into the patient-provider relationship is essential to paving the way for a better use of genomics by all. We conducted a qualitative study comprising a series of focus groups with 21 neurologists and endocrinologists about their genetic testing practices in the western part of France. The interviews were transcribed and analyzed for major themes. We identified an automated care management procedure of genetic testing that affects patient autonomy. The simple fact of having a written consent cannot justify a genetic test given the stakes associated with the results. We also suggest orienting practices toward a systemic approach using a multidisciplinary team or network to provide resources for dealing with uncertainties in interpreting results or situations that require additional technical or clinical skills and, if necessary, to allow for joint consultations with both a geneticist and a non-geneticist medical specialist.

Public Experiences, Knowledge and Expectations about Medical Genetics and the Use of Genetic Information

2004 ◽  
Vol 7 (1) ◽  
pp. 33-43 ◽  
Author(s):  
Lidewij Henneman ◽  
Danielle R.M. Timmermans ◽  
Gerrit van der Wal
Keyword(s):  
Genetic Information ◽  
Medical Genetics

scholarly journals Genetic discrimination: emerging ethical challenges in the context of advancing technology

2019 ◽  
Author(s):  
Carolyn Riley Chapman ◽  
Kripa Sanjay Mehta ◽  
Brendan Parent ◽  
Arthur L Caplan
Keyword(s):  
Health Insurance ◽  
Genetic Testing ◽  
Genetic Information ◽  
Predictive Power ◽  
The United States ◽  
Legal Framework ◽  
Genetic Discrimination ◽  
Ethical Challenges ◽  
Health Related ◽  
Discrimination In Employment

Abstract Genetic testing is becoming more widespread, and its capabilities and predictive power are growing. In this paper, we evaluate the ethical justifications for and strength of the US legal framework that aims to protect patients, research participants, and consumers from genetic discrimination in employment and health insurance settings in the context of advancing genetic technology. The Genetic Information Nondiscrimination Act (GINA) and other laws prohibit genetic and other health-related discrimination in the United States, but these laws have significant limitations, and some provisions are under threat. If accuracy and predictive power increase, specific instances of use of genetic information by employers may indeed become ethically justifiable; however, any changes to laws would need to be adopted cautiously, if at all, given that people have consented to genetic testing with the expectation that there would be no genetic discrimination in employment or health insurance settings. However, if our society values access to healthcare for both the healthy and the sick, we should uphold strict and broad prohibitions against genetic and health-related discrimination in the context of health insurance, including employer-based health insurance. This is an extremely important but often overlooked consideration in the current US debate on healthcare.

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.

Legal and social issues in medical genetics

1979 ◽  
Vol 134 (1) ◽  
pp. 83-99
Author(s):  
J. Howard^Turner ◽  
T.Terry Hayashi ◽  
Donald D. Pogoloff
Keyword(s):  
Social Issues ◽  
Medical Genetics
Sign in / Sign up

Export Citation Format

Share Document