Genetic testing and insurance implications: Surveying the US general population about discrimination concerns and knowledge of the Genetic Information Nondiscrimination Act (GINA)

2021 ◽  
Author(s):  
Anya E. R. Prince ◽  
Wendy R. Uhlmann ◽  
Sonia M. Suter ◽  
Aaron M. Scherer
Keyword(s):  
Genetic Testing ◽  
General Population ◽  
Genetic Information ◽  
The Us

Genetics and the Law

2021 ◽  
Author(s):  
Maxwell Mehlman ◽  
Sonia Suter
Keyword(s):  
Genetic Testing ◽  
Genetic Information ◽  
Ethical Issues ◽  
Genomic Analysis ◽  
State Level ◽  
The United States ◽  
Genetic Privacy ◽  
Duty To Warn ◽  
Us Congress ◽  
The Us

This chapter examines state and federal laws in the United States that govern legal and ethical issues concerning genetic and genomic analysis for diagnostic purposes; regulation of genetic testing, genetic discrimination, and privacy; and clinical applications of genomics. At the state level, legislatures have enacted laws in various areas, including newborn screening and nondiscrimination and privacy protections. In addition, state courts have addressed some issues concerning genetics, such as the duty to warn. At the federal level, the US Congress has enacted a specific statute, the Genetic Information and Nondiscrimination Act, which protects genetic information. Other federal statutes, which do not address genetics or genomics in particular, also have relevance in the genetics context, including laws that protect against certain forms of discrimination or that regulate laboratories. Federal agencies also play a role, for example, in protecting genetic privacy or regulating genetic tests. Finally, the US Constitution is relevant to genomics, especially concerning reproductive rights, which are pertinent to reproductive genetic testing.

scholarly journals Cost-effectiveness of pharmacogenetic-guided treatment: are we there yet?

2016 ◽  
Author(s):  
Moira Verbelen ◽  
Michael E Weale ◽  
Cathryn M Lewis
Keyword(s):  
Genetic Testing ◽  
Cost Effectiveness ◽  
Cost Saving ◽  
Genetic Information ◽  
Cost Effective ◽  
Economic Evaluations ◽  
Treatment Needs ◽  
The Us ◽  
The Cost ◽  
The Impact

AbstractPharmacogenetics (PGx) has the potential to personalize pharmaceutical treatments. Many relevant gene-drug associations have been discovered, but PGx guided treatment needs to be cost-effective as well as clinically beneficial to be incorporated into standard healthcare. Progress in this area can be assessed by reviewing economic evaluations to determine the cost-effectiveness of PGx testing versus standard treatment. We performed a review of economic evaluations for PGx associations listed in the US Food and Drug Administration (FDA) Table of Pharmacogenomic Biomarkers in Drug Labeling (http://www.fda.gov/Drugs/ScienceResearch/ResearchAreas/Pharmacogenetics/ucm083378.htm). We determined the proportion of evaluations that found PGx guided treatment to be cost-effective or dominant over the alternative strategies, and we estimated the impact on this proportion of removing the cost of genetic testing. Of the 130 PGx associations in the FDA table, 44 economic evaluations, relating to 10 drugs, were identified. Of these evaluations, 57% drew conclusions in favour of PGx testing, of which 30% were cost-effective and 27% were dominant (cost-saving). If genetic information was freely available, 75% of economic evaluations would support PGx guided treatment, of which 25% would be cost-effective and 50% would be dominant. Thus, PGx guided treatment can be a cost-effective and even cost-saving strategy. Having genetic information readily available in the clinical health record is a realistic future prospect, and would make more genetic tests economically worthwhile. However, few drugs with PGx associations have been studied and more economic evaluations are needed to underpin the uptake of genetic testing in clinical practice.

scholarly journals Genetic Testing Preferences and Intentions in U.S. Patients with Clinically Diagnosed Familial Hypercholesterolemia

2019 ◽  
Author(s):  
Hannah Wand ◽  
Amy C. Sturm ◽  
Lori Erby ◽  
Iris Kindt ◽  
William M. P. Klein
Keyword(s):  
Factor Analysis ◽  
Genetic Testing ◽  
Familial Hypercholesterolemia ◽  
Genetic Information ◽  
Ldl Cholesterol ◽  
Inverse Association ◽  
Mendelian Disorder ◽  
Factors Associated ◽  
Cholesterol Levels ◽  
The Us

ABSTRACTPurposeFamilial Hypercholesterolemia (FH) is a common Mendelian disorder characterized by elevated LDL cholesterol levels, which if untreated can cause premature heart disease. Less than 10% of cases in the US are diagnosed, and uptake of genetic testing is suboptimal. This study investigates decisionmaking factors associated with intentions to have FH genetic testing among patients clinically diagnosed with FH.MethodsClinically diagnosed adults with FH and no genetic testing were recruited through the FH Foundation and lipid clinics. Participants completed a survey containing items capturing various reasons to engage in genetic testing.ResultsExploratory factor analysis of survey items identified three factors: (1) aversion to FH genetic information, (2) curiosity regarding medical/family history, (3) and psychological reassurance. Psychological reassurance was, in turn, the only significant predictor of genetic testing intentions. The effect of reassurance was qualified by aversion such that the inverse association between aversion and genetic testing intentions was greater among those with low perceived reassurance.ConclusionFindings suggest that clinically diagnosed patients’ decisions about FH genetic testing are driven principally by psychological reassurance.

scholarly journals First French study relative to preconception genetic testing: 1500 general population participants’ opinion

2021 ◽  
Vol 16 (1) ◽  
Author(s):  
Valérie Bonneau ◽  
Mathilde Nizon ◽  
Xenia Latypova ◽  
Aurélie Gaultier ◽  
Eugénie Hoarau ◽  
...  
Keyword(s):  
Genetic Testing ◽  
General Population ◽  
Social Security ◽  
Genetic Disease ◽  
Ethical Issues ◽  
Family Doctor ◽  
Screening Strategy ◽  
Medical Prescription ◽  
Medical Progress ◽  
Increased Risk

Abstract Background Until very recently, preconception genetic testing was only conducted in particular communities, ethnic groups or families for which an increased risk of genetic disease was identified. To detect in general population a risk for a couple to have a child affected by a rare, recessive or X-linked, genetic disease, carrier screening is proposed in several countries. We aimed to determine the current public opinion relative to this approach in France, using either a printed or web-based questionnaire. Results Among the 1568 participants, 91% are favorable to preconception genetic tests and 57% declare to be willing to have the screening if the latter is available. A medical prescription by a family doctor or a gynecologist would be the best way to propose the test for 73%, with a reimbursement from the social security insurance. However, 19% declare not to be willing to use the test because of their ethic or moral convictions, and the fear that the outcome would question the pregnancy. Otherwise, most participants consider that the test is a medical progress despite the risk of an increased medicalization of the pregnancy. Conclusion This first study in France highlights a global favorable opinion for the preconception genetic carrier testing under a medical prescription and a reimbursement by social security insurance. Our results emphasize as well the complex concerns underpinned by the use of this screening strategy. Therefore, the ethical issues related to these tests include the risk of eugenic drift mentioned by more than half of the participants.

scholarly journals Ethical Considerations on Pediatric Genetic Testing Results in Electronic Health Records

2020 ◽  
Vol 11 (05) ◽  
pp. 755-763
Author(s):  
Shibani Kanungo ◽  
Jayne Barr ◽  
Parker Crutchfield ◽  
Casey Fealko ◽  
Neelkamal Soares
Keyword(s):  
Genetic Testing ◽  
Best Practices ◽  
Health Care Providers ◽  
Genetic Information ◽  
Ethical Issues ◽  
Interdisciplinary Approach ◽  
Care Providers ◽  
Ethical Considerations ◽  
Electronic Health ◽  
Genetic Results

Abstract 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.

Genetic Testing, Genetic Information, and the Role of Maternal-Child Health Nurses in Israel

2006 ◽  
Vol 38 (3) ◽  
pp. 219-224 ◽  
Author(s):  
Sivia Barnoy ◽  
Dorit Appel ◽  
Chava Peretz ◽  
Hana Meiraz ◽  
Mally Ehrenfeld
Keyword(s):  
Genetic Testing ◽  
Child Health ◽  
Genetic Information ◽  
Maternal Child Health ◽  
Maternal Child

Comorbidity of DSM–III–R Major Depressive Disorder in the General Population: Results from the US National Comorbidity Survey

1996 ◽  
Vol 168 (S30) ◽  
pp. 17-30 ◽  
Author(s):  
R. C. Kessler ◽  
C. B. Nelson ◽  
K. A. McGonagle ◽  
J. Liu ◽  
M. Swartz ◽  
...  
Keyword(s):  
Major Depressive Disorder ◽  
General Population ◽  
Depressive Disorder ◽  
Composite International Diagnostic Interview ◽  
Population Data ◽  
Diagnostic Interview ◽  
Prior History ◽  
Major Depressive ◽  
National Comorbidity Survey ◽  
The Us

General population data are presented on the prevalence and correlates of comorbidity between DSM–III–R major depressive disorder (MDD) and other DSM–III–R disorders. The data come from the US National Comorbidity Survey, a large general population survey of persons aged 15–54 years in the non-institutionalised civilian population. Diagnoses are based on a modified version of the Composite International Diagnostic Interview (CIDI). The analysis shows that most cases of lifetime MDD are secondary, in the sense that they occur in people with a prior history of another DSM–III–R disorder. Anxiety disorders are the most common primary disorders. The time-lagged effects of most primary disorders on the risk of subsequent MDD continue for many years without change in magnitude. Secondary MDD is, in general, more persistent and severe than pure or primary MDD. This has special public health significance because lifetime prevalence of secondary MDD has increased in recent cohorts, while the prevalence of pure and primary depression has remained unchanged.

scholarly journals Is there evidence that we should screen the general population for Lynch syndrome with genetic testing? A systematic review

2017 ◽  
Vol Volume10 ◽  
pp. 49-60 ◽  
Author(s):  
Anya Prince ◽  
Jean Cadigan ◽  
Gail Henderson ◽  
James Evans ◽  
Michael Adams ◽  
...  
Keyword(s):  
Systematic Review ◽  
Genetic Testing ◽  
General Population ◽  
Lynch Syndrome

scholarly journals Paraben exposures and asthma-related outcomes among children from the US general population

2019 ◽  
Vol 143 (3) ◽  
pp. 948-956.e4 ◽  
Author(s):  
Lesliam Quirós-Alcalá ◽  
Nadia N. Hansel ◽  
Meredith C. McCormack ◽  
Elizabeth C. Matsui
Keyword(s):  
General Population ◽  
The Us

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.

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