scholarly journals Requiring genetic knowledge: a principled case for support

Legal Studies ◽  
2015 ◽  
Vol 35 (3) ◽  
pp. 532-550 ◽  
Author(s):  
Victoria Chico
Keyword(s):  
Genetic Information ◽  
Genetic Test ◽  
Genetic Knowledge ◽  
Legal Recognition ◽  
Whole Genomes ◽  
The Usa ◽  
Personal Harm

Should people be required to know information about themselves that arises from their genetic test? This question is highly relevant given the NHS's plans to sequence 100,000 whole genomes before 2017. The approach to this issue in the USA generated significant opposition to requiring knowledge, on the basis that it interferes with autonomy. This piece presents a different perspective, arguing that requiring knowledge may not undermine the legal conception of autonomy, giving reason to doubt that it would be unlawful to require people to have genetic information about themselves. Following this, the piece presents an alternative principled position that might support a legal recognition of the interest in not having information about oneself; namely that of preventing personal harm. However, this approach runs into difficulties if the reasons for requiring knowledge are also based on preventing personal harm. The argument considers how interests might be balanced in this competing harms context.

Randomized trial of web-based genetic education versus usual care in advanced cancer patients undergoing tumor genetic testing: Results from the ECOG-ACRIN NCI Community Oncology Research Program (NCORP; EAQ152) COMET trial.

2020 ◽  
Vol 38 (15_suppl) ◽  
pp. 2008-2008
Author(s):  
Angela R. Bradbury ◽  
Ju-Whei Lee ◽  
Jill B Gaieski ◽  
Shuli Li ◽  
Ilana F Gareen ◽  
...  
Keyword(s):  
Genetic Testing ◽  
Usual Care ◽  
Genetic Test ◽  
Genetic Knowledge ◽  
Test Results ◽  
Advanced Cancer Patients ◽  
Web Based ◽  
Genetic Test Results ◽  
Anxiety Depression ◽  
Web Intervention

2008 Background: Enthusiasm for precision oncology may obscure the complex psychosocial and ethical considerations for tumor genetic testing. Low patient genetic knowledge has been documented and heightens the risk for adverse experiences. We developed a web-based intervention to increase genetic knowledge and decrease distress among advanced cancer patients undergoing tumor genetic testing. Methods: 594 patients (80% from NCORP Community Sites) were recruited and randomized to web-intervention (n = 293) or usual care (n = 301), prior to receipt of tumor genetic test results. Primary outcomes were genetic knowledge, anxiety, depression, and cancer-specific distress measured at T0 (prior to intervention), T1 (post-intervention), T2 (after receipt of tumor results) and T3 (3 months post receipt of tumor results). Secondary outcomes included satisfaction, regret and disappointment. The effect of web-intervention was evaluated using t-test, multiple linear regression and logistic regression, with an intent-to-treat approach. Results: Patients randomized to web-intervention had better knowledge improvement than those randomized to usual care (T1-T0, p < 0.0001; T2-T0, p = 0.003). No difference was observed in change scores for anxiety, depression or cancer-specific distress. To find the moderators of intervention effect (including sex, age, education, and literacy) two 2-way interactions were noted with statistical significance: higher depression among those in the intervention arm versus the control arm for patients with lower literacy (p = 0.03); and lower cancer-specific distress among women in the intervention arm than with usual care but no such effect noted in men (p = 0.01). 71% of patients reported receiving tumor test results and this did not differ by arm. Only 20% of patients reported regret and disappointment at T2, which was more likely for those without a mutation of interest (MOI) detected vs those with a MOI detected (OR = 2.08, 95% CI, 1.13 to 3.83, p = 0.02). Conclusions: Web-based education prior to receipt of tumor genetic test results increases patient understanding of tumor genetic testing. While the intervention did not significantly reduce distress, results suggest that women who received the intervention had lower cancer-specific distress than those with usual care. Future refinements to the web-intervention are needed to address low literacy groups, men and patients with no actionable results. Clinical trial information: NCT02823652.

scholarly journals The genetic contribution to disease risk and variability in response to diet: where is the hidden heritability?

2012 ◽  
Vol 72 (1) ◽  
pp. 40-47 ◽  
Author(s):  
Anne Marie Minihane
Keyword(s):  
Genetic Information ◽  
Disease Risk ◽  
Health Benefit ◽  
Genetic Knowledge ◽  
Genetic Contribution ◽  
Public Health Benefit ◽  
Common Genetic Variants ◽  
Technological Developments ◽  
Response To Environmental Change ◽  
The Impact

Ten years ago, it was assumed that disease risk prediction and personalised nutrition based on genetic information would now be in widespread use. However, this has not (yet) transpired. The interaction of genetic make-up, diet and health is far more complex and subtle than originally thought. With a few notable exceptions, the impact of identified common genetic variants on phenotype is relatively small and variable in their penetrance. Furthermore, the known variants account for only a fraction of what we believe to be the total genetic contribution to disease risk and heterogeneity in response to environmental change. Here, the question ‘how far have we progressed and are we likely to get there’ (Rimbach and Minihane, 2009) is revisited with regard to the translation of genetic knowledge into public health benefit. It is concluded that progress to date has been modest. It is hoped that recent technological developments allowing the detection of rarer variants and future use of more hypothesis-driven targeted data analysis will reveal most of the currently ‘hidden’ significant genetic variability.

Beyond “Genetic Discrimination”: Toward the Broader Harm of Geneticism

1995 ◽  
Vol 23 (4) ◽  
pp. 345-353 ◽  
Author(s):  
Susan M. Wolf
Keyword(s):  
Health Insurance ◽  
Genetic Information ◽  
Genetic Discrimination ◽  
Genetic Knowledge ◽  
Analytic Framework ◽  
Genetic Tests ◽  
Race And Gender ◽  
And Gender ◽  
Almost All ◽  
As If

The current explosion of genetic knowledge and the rapid proliferation of genetic tests has rightly provoked concern that we are approaching a future in which people will be labeled and disadvantaged based on genetic information. Indeed, some have already suffered harm, including denial of health insurance. This concern has prompted an outpouring of analysis. Yet almost all of it approaches the problem of genetic disadvantage under the rubric of “genetic discrimination.”This rubric is woefully inadequate to the task at hand. It ignores years of commentary on race and gender demonstrating the limits of antidiscrimination analysis as an analytic framework and corrective tool. Too much discussion of genetic disadvantage proceeds as if scholars of race and gender had not spent decades critiquing and developing antidiscrimination theory.Indeed, there are multiple links among race, gender, and genetics. Dorothy Roberts has discussed the historical links between racism and genetics, while she and others have begun to map connections between gender and genetics.

scholarly journals COMPARATIVE ANALYSIS OF THE HISTORY OF DEVELOPMENT OF THE MARRIAGE IN FACT INSTITUTE IN RUSSIA AND THE USA

2016 ◽  
Vol 1 (6) ◽  
pp. 0-0
Author(s):  
Анна Назарова ◽  
Anna Nazarova
Keyword(s):  
Comparative Analysis ◽  
Adult Population ◽  
Original Form ◽  
Population Census ◽  
Men And Women ◽  
Legal Recognition ◽  
History Of Development ◽  
The Usa ◽  
History Of ◽  
Historical Periods

This article is devoted to the comparative analysis of the history of development of the marriage in fact Institute in Russia and the USA. The purpose of the analysis of the development of the marriage in fact Institute is conditioned by the increase in the number of marriages in fact at the present time. The results of the National population census in 2010 showed that 13,2% of the adult population are in de facto marriages. Historical analysis allows studying the experience of the actual development of the marriage in fact institution in the past and gives the opportunity to predict the development of this Institute in future. In order to obtain the best results of the investigation, the author uses a comparative law method that allows considering the experience of not only Russia, but also foreign countries. In the article the author examines the causes and approaches to legal recognition and regulation of de facto relations in different historical periods. As a result of the conducted research the author concludes that the original form of marriage was simple cohabitation of men and women. Legal marriage appeared when the state introduced regulations for marriage registration. At the same time in certain historical periods the cohabitation of men and women had legal value due to the social need that had arisen in the society. Based on the above, there are prerequisites for legal recognition of marriages in fact in future, since in 1926 registration of a much smaller number of marriages in fact (7%) resulted in the fact that RSFSR recognized the rights of de facto spouses similar to legal spouses.

The Genetic Revolution

2011 ◽  
pp. 288-295
Author(s):  
Atefeh Sadri McCampbell ◽  
Linda Moorhead Clare
Keyword(s):  
Genetic Testing ◽  
Genetic Information ◽  
Large Scale ◽  
Dna Analysis ◽  
Genetic Test ◽  
Business Community ◽  
Federal Legislation ◽  
Ethical Considerations ◽  
Information Technology Security ◽  
Complex Relationships

The following chapter defines the practice of DNA analysis and identifies the ethical considerations of human genetic testing in the workplace and technological issues. The topics presented include: the history of DNA testing, future genetic test development inclusive of, large scale, three-dimensional computational technology for analyzing, storing and presenting complex relationships between gene products and clinical outcomes, and currently enacted legislation pertaining to genetic information. Also examined are the ethical concerns pursuant to human genetic testing and information technology security. A survey was conducted to determine the view and level of knowledge among business professionals in the workplace on the ethical considerations of genetic testing. Questions included business ethics, confidentiality issues and the enactment of state and federal legislation for genetic testing. The results of the survey indicate concern within the business community for ethical issues concerning confidentiality of genetic test results and a strong desire for passage of state and federal legislation to avoid the misuse of genetic information. Finally, conclusions are determined based upon the data and the direction for future study is defined.

scholarly journals Relationship between genetic knowledge and familial communication of CRC risk and intent to communicate CRCP genetic information: insights from FamilyTalk eMERGE III

2020 ◽  
Author(s):  
Sukh Makhnoon ◽  
Deborah J Bowen ◽  
Brian H Shirts ◽  
Stephanie M Fullerton ◽  
Hendrika W Meischke ◽  
...  
Keyword(s):  
Genetic Information ◽  
Clinical Sample ◽  
Controlled Trial ◽  
Genetic Knowledge ◽  
Patient Centered ◽  
Genomic Test ◽  
Improved Outcomes ◽  
Family Level ◽  
Centered Care ◽  
Future Intention

Abstract Successful translation of genetic information into patient-centered care and improved outcomes depends, at least in part, on patients’ genetic knowledge. Although genetic knowledge is believed to be an important facilitator of familial communication of genetic risk information, empirical evidence of this association is lacking. We examined whether genetic knowledge was related to frequency of current familial communication about colorectal cancer and polyp (CRCP) risk, and future intention to share CRCP-related genomic test results with family members in a clinical sample of patients. We recruited 189 patients eligible for clinical CRCP sequencing to the eMERGE III FamilyTalk randomized controlled trial and surveyed them about genetic knowledge and familial communication at baseline. Participants were primarily Caucasian, 47% male, average age of 68 years, mostly well educated, and with high-income levels. Genetic knowledge was positively associated with future-intended familial communication of genetic information (odds ratio = 1.11, 95% confidence interval: 1.02–1.23), but not associated with current communication of CRC risk (β = 0.01, p = .58). Greater current communication of CRC risk was associated with better family functioning (β = 0.04, p = 8.2e-5). Participants’ genetic knowledge in this study was minimally associated with their intended familial communication of genetic information. Although participants have good intentions of communication, family-level factors may hinder actual follow through of these intentions. Continued focus on improving proband’s genetic knowledge coupled with interventions to overcome family-level barriers to communication may be needed to improve familial communication rates.

Genetic Discrimination in Health Insurance: Current Legal Protections and Industry Practices

2007 ◽  
Vol 44 (3) ◽  
pp. 350-368 ◽  
Author(s):  
Karen Pollitz ◽  
Beth N. Peshkin ◽  
Eliza Bangit ◽  
Kevin Lucia
Keyword(s):  
Health Insurance ◽  
Genetic Information ◽  
Genetic Test ◽  
Genetic Discrimination ◽  
Health Condition ◽  
Future Health ◽  
Individual Health ◽  
Increased Risk ◽  
The Individual ◽  
Test Result

Most states have enacted genetic nondiscrimination laws in health insurance, and federal legislation is pending in Congress. Scientists worry fear of discrimination discourages some patients from participating in clinical trials and hampers important medical research. This paper describes a study of medical underwriting practices in the individual health insurance market related to genetic information. Underwriters from 23 companies participated in a survey that asked them to underwrite four pairs of hypothetical applicants for health insurance. One person in each pair had received a positive genetic test result indicating increased risk of a future health condition—breast cancer, hemochromatosis, or heart disease—for a total of 92 underwriting decisions on applications involving genetic information. In seven of these 92 applications, underwriters said they would deny coverage, place a surcharge on premiums, or limit covered benefits based on an applicant's genetic information.

scholarly journals Application of a framework to guide genetic testing communication across clinical indications

2021 ◽  
Vol 13 (1) ◽  
Author(s):  
Miranda L. G. Hallquist ◽  
Eric P. Tricou ◽  
Kelly E. Ormond ◽  
Juliann M. Savatt ◽  
Curtis R. Coughlin ◽  
...  
Keyword(s):  
Genetic Testing ◽  
Genetic Information ◽  
Genetic Test ◽  
Group Consensus ◽  
Future Studies ◽  
Communication Framework ◽  
Post Test ◽  
Standard Set ◽  
Communication Approach ◽  
Limit Access

AbstractBackgroundGenetic information is increasingly relevant across healthcare. Traditional genetic counseling (GC) may limit access to genetic information and may be more information and support than some individuals need. We report on the application and clinical implications of a framework to consistently integrate genetics expertise where it is most useful to patients.MethodsThe Clinical Genome Resource’s (ClinGen) Consent and Disclosure Recommendations (CADRe) workgroup designed rubrics to guide pre- and post-genetic test communication. Using a standard set of testing indications, pre- and post-test rubrics were applied to 40 genetic conditions or testing modalities with diverse features, including variability in levels of penetrance, clinical actionability, and evidence supporting a gene-disease relationship. Final communication recommendations were reached by group consensus.ResultsCommunication recommendations were determined for 478 unique condition-indication or testing-indication pairs. For half of the conditions and indications (238/478), targeted discussions (moderate communication depth) were the recommended starting communication level for pre- and post-test conversations. Traditional GC was recommended pre-test for adult-onset neurodegenerative conditions for individuals with no personal history and post-test for most conditions when genetic testing revealed a molecular diagnosis as these situations are likely higher in complexity and uncertainty. A brief communication approach was recommended for more straightforward conditions and indications (e.g., familial hypercholesterolemia; familial variant testing).ConclusionsThe CADRe recommendations provide guidance for clinicians in determining the depth of pre- and post-test communication, strategically aligning the anticipated needs of patients with the starting communication approach. Shorter targeted discussions or brief communications are suggested for many tests and indications. Longer traditional GC consultations would be reserved for patients with more complex and uncertain situations where detailed information, education, and psychological support can be most beneficial. Future studies of the CADRe communication framework will be essential for determining if CADRe-informed care supports quality patient experience while improving access to genetic information across healthcare.

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