Genetic Privacy

1995 ◽  
Vol 23 (4) ◽  
pp. 320-330 ◽  
Author(s):  
Lawrence O. Gostin
Keyword(s):  
Genetic Testing ◽  
Ethnic Groups ◽  
Sense Of Self ◽  
Personal Attributes ◽  
Private Sphere ◽  
Genomic Information ◽  
Genetic Privacy ◽  
Family Identity ◽  
Reproductive Counseling ◽  
Human Genomic

Human genomic information is invested with enormous power in a scientifically motivated society. Genomic information has the capacity to produce a great deal of good for society. It can help identify and understand the etiology and pathophysiology of disease. In so doing, medicine and science can expand the ability to prevent and ameliorate human malady through genetic testing, treatment, and reproductive counseling.Genomic information can just as powerfully serve less beneficent ends. Information can be used to discover deeply personal attributes of an individual's life. That information can be used to invade a person's private sphere, to alter a person's sense of self- and family identity, and to affect adversely opportunities in education, employment, and insurance. Genomic information can also affect families and ethnic groups that share genetic similarities.

scholarly journals Feasibility and Assessment of a Cascade Traceback Screening Program (FACTS): Protocol for a Multisite Study to Implement and Assess an Ovarian Cancer Traceback Cascade Testing Program

2021 ◽  
Vol 11 (6) ◽  
pp. 543
Author(s):  
Anna DiNucci ◽  
Nora B. Henrikson ◽  
M. Cabell Jonas ◽  
Sundeep Basra ◽  
Paula Blasi ◽  
...  
Keyword(s):  
Ovarian Cancer ◽  
Genetic Testing ◽  
Health Care Providers ◽  
Screening Program ◽  
Qualitative Interviews ◽  
Care Providers ◽  
Genetic Privacy ◽  
Program Outcomes ◽  
Cascade Testing ◽  
Program Costs

Ovarian cancer (OVCA) patients may carry genes conferring cancer risk to biological family; however, fewer than one-quarter of patients receive genetic testing. “Traceback” cascade testing —outreach to potential probands and relatives—is a possible solution. This paper outlines a funded study (U01 CA240747-01A1) seeking to determine a Traceback program’s feasibility, acceptability, effectiveness, and costs. This is a multisite prospective observational feasibility study across three integrated health systems. Informed by the Conceptual Model for Implementation Research, we will outline, implement, and evaluate the outcomes of an OVCA Traceback program. We will use standard legal research methodology to review genetic privacy statutes; engage key stakeholders in qualitative interviews to design communication strategies; employ descriptive statistics and regression analyses to evaluate the site differences in genetic testing and the OVCA Traceback testing; and assess program outcomes at the proband, family member, provider, system, and population levels. This study aims to determine a Traceback program’s feasibility and acceptability in a real-world context. It will account for the myriad factors affecting implementation, including legal issues, organizational- and individual-level barriers and facilitators, communication issues, and program costs. Project results will inform how health care providers and systems can develop effective, practical, and sustainable Traceback programs.

Clinical Profile and Health Disparities in a Multiethnic Cohort of Patients With Hypertrophic Cardiomyopathy

2021 ◽  
Vol 14 (3) ◽  
Author(s):  
Alexandra Butters ◽  
Caitlin R. Semsarian ◽  
Richard D. Bagnall ◽  
Laura Yeates ◽  
Fergus Stafford ◽  
...  
Keyword(s):  
Health Disparities ◽  
Genetic Testing ◽  
Hypertrophic Cardiomyopathy ◽  
Ethnic Groups ◽  
South Asians ◽  
Middle Eastern ◽  
East Asian ◽  
North African ◽  
East Asians ◽  
Cardioverter Defibrillator

Background: Clinical studies of hypertrophic cardiomyopathy are over-represented by individuals of European ethnicity, with less known about other ethnic groups. We investigated differences between patients in a multiethnic Australian hypertrophic cardiomyopathy population. Methods: We performed a retrospective cohort study of 836 unrelated hypertrophic cardiomyopathy probands attending a specialized clinic between 2002 and 2020. Major ethnic groups were European (n=611), East Asian (n=75), South Asian (n=58), and Middle Eastern and North African (n=68). The minor ethnicity groups were Oceanian (n=9), People of the Americas (n=7), and African (n=8). One-way ANOVA with Dunnett post hoc test and Bonferroni adjustment were performed. Results: Mean age of the major ethnic groups was 54.9±16.9 years, and 527 (65%) were male. Using the European group as the control, East Asian patients had a lower body mass index (29 versus 25 kg/m 2 , P <0.0001). South Asians had a lower prevalence of atrial fibrillation (10% versus 31%, P =0.024). East Asians were more likely to have apical hypertrophy (23% versus 6%, P <0.0001) and Middle Eastern and North African patients more likely to present with left ventricular outflow tract obstruction (46% versus 34%, P =0.0003). East Asians were less likely to undergo genetic testing (55% versus 85%, P <0.0001) or have an implantable cardioverter-defibrillator implanted (19% versus 36%, P =0.037). East Asians were more likely to have a causative variant in a gene other than MYBPC3 or MYH7 , whereas Middle Eastern and North African and South Asians had the highest rates of variants of uncertain significance (27% and 21%, P <0.0001). Conclusions: There are few clinical differences based on ethnicity, but importantly, we identify health disparities relating to access to genetic testing and implantable cardioverter-defibrillator use. Unless addressed, these gaps will likely widen as we move towards precision-medicine–based care of individuals with hypertrophic cardiomyopathy.

Family, Identity, and the American Dream: Service Providers’ Perspectives on Families’ Experiences With Foreclosure

2018 ◽  
Vol 99 (1) ◽  
pp. 16-28 ◽  
Author(s):  
Cyleste C. Collins ◽  
Elizabeth Anthony ◽  
Debbie Taylor ◽  
David Rothstein
Keyword(s):  
Social Work ◽  
American Dream ◽  
Service Providers ◽  
Sense Of Self ◽  
Qualitative Interviews ◽  
Financial Impact ◽  
Family Identity ◽  
Children's Education ◽  
Family Memories ◽  
Children’S Education

This article reports the findings from in-depth qualitative interviews with 18 service providers who worked with families facing foreclosure. The interviews’ purpose was to better understand a broad range of families’ experiences and inductive coding focused on quotes that reflected the meaning of those experiences. The analysis extracted three main themes related to foreclosure representing threat: (a) foreclosure threatened children’s education, (b) foreclosure threatened family memories, and (c) foreclosure threatened clients’ sense of self and attaining the American Dream. Providers reported that families fought to keep their homes and hoped to buy again after foreclosure. The findings suggest that social work services could be beneficial in helping families navigate the emotional and financial impact of the foreclosure experience.

scholarly journals Leveraging human genomic information to identify nonhuman primate sequences for expression array development

BMC Genomics ◽  
2005 ◽  
Vol 6 (1) ◽  
Author(s):  
Eliot R Spindel ◽  
Mark A Pauley ◽  
Yibing Jia ◽  
Courtney Gravett ◽  
Shaun L Thompson ◽  
...  
Keyword(s):  
Nonhuman Primate ◽  
Genomic Information ◽  
Expression Array ◽  
Human Genomic

scholarly journals “…This Has to Do With My Identity. And I Don't Want to Make it Totally Transparent.” Identity Relevance in the Attitudes of Affected People and Laypersons to the Handling of High-Throughput Genomic Data

2020 ◽  
Vol 5 ◽  
Author(s):  
Alexander Urban
Keyword(s):  
Genetic Testing ◽  
Identity Construction ◽  
Genome Sequencing ◽  
Qualitative Content Analysis ◽  
Genomic Data ◽  
Genomic Information ◽  
Genetic Tests ◽  
The Public ◽  
Theoretical Approaches ◽  
Scientific Context

With the establishment of genome sequencing, the influence of genomic information on self-understanding and identity construction has become increasingly important. New sequencing methods far exceed previous genetic tests in terms of scope and quantity. Despite theoretical approaches, however, there are few empirical findings on the identity-relevant influence of genomic information. The present study examines genomic information's identity-relevant influences and considers whether developments in the field of genome sequencing may generate problems that are not yet addressed by existing identity concepts based on traditional genetic tests. The study is based on 10 partially standardized interviews with personally affected persons and four focus groups with medical laypersons as representatives of the public, which were evaluated on the basis of qualitative content analysis. As a result, this paper presents five thematic areas with identity-relevant references within subjective attitudes toward the handling of genomic information, and also derives two basic identity concepts. The results indicate that the lay discourse is still strongly based on older debates about genetic testing and that the view on the complexity of genomic information established in the scientific context has thus far no influence on the perspectives either of those affected or laypersons.

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.

Genetic Testing and Protection of Genetic Privacy

Cyber Crime ◽  
2013 ◽  
pp. 1756-1777
Author(s):  
Sergio Romeo-Malanda ◽  
Dianne Nicol ◽  
Margaret Otlowski
Keyword(s):  
Genetic Testing ◽  
Genetic Privacy

Overlapping Architectures

2017 ◽  
Author(s):  
Roderick N. Labrador
Keyword(s):  
Political Economy ◽  
Ethnic Groups ◽  
Sense Of Self ◽  
Land Rights ◽  
Community Center ◽  
Capitalist System ◽  
Communal Land ◽  
Industrial Plantation ◽  
Political Economic ◽  
Mode Of Production

This chapter uses the Filipino Community Center as the primary analytical site to suggest that through the physical building itself, Filipinos discursively construct identity territorializations that map out a collective sense of place and a sense of self along political economic and ideological coordinates. The Filipino Community Center represents overlapping architectures, a type of historical and political economic layering whereby the contemporary late capitalist, transnational world anchored to a multiculturalist ideology is built on top of the industrial plantation-based agri-capitalist system dependent on the racialization of its workers, which itself is constructed on top of an indigenous, communal land rights-based mode of production. In other words, the Filipino Community Center depends on the so-called “sakada story,” a narrative of development that positions indigeneity (represented as the Hawaiian past), racialization (depicted as the exploitation of Asian and Hawaiian labor during the plantation era), and multiculturalism (portrayed as the contemporary period of liberal inclusion in which the various racial and ethnic groups share power) in a linear historical progression that corresponds with changes in Hawaiʻi's political economy and modes of production. In this way, the completion of the Filipino Community Center embodies a settler Filipino developmental narrative in which Waipahu (and by extension, Hawaiʻi) is constructed and claimed as a Filipino “home”.

Direct to consumer genetic testing and the libertarian right to test

2017 ◽  
Vol 44 (11) ◽  
pp. 787-789 ◽  
Author(s):  
Wendy Elizabeth Bonython ◽  
Bruce Baer Arnold
Keyword(s):  
Genetic Testing ◽  
Physical Properties ◽  
Prima Facie ◽  
Genetic Privacy ◽  
Physical Body ◽  
Direct To Consumer ◽  
Rights And Interests ◽  
Privacy Violation ◽  
The Right ◽  
Regulatory Intervention

Loi recently proposed a libertarian right to direct to consumer genetic testing (DTCGT)— independent of autonomy or utility—reflecting Cohen’s work on self-ownership and Hohfeld’s model of jural relations. Cohen’s model of libertarianism dealt principally with self-ownership of the physical body. Although Loi adequately accounts for the physical properties of DNA, DNA is also an informational substrate, highly conserved within families. Information about the genome of relatives of the person undergoing testing may be extrapolated without requiring direct engagement with their personal physical copy of the genome, triggering rights and interests of relatives that may differ from the rights and interests of others, that is, individual consumers, testing providers and regulators. Loi argued that regulatory interference with exercise of the right required justification, whereas prima facie exercise of the right did not. Justification of regulatory interference could include ‘conflict with other people’s rights’, ‘aggressive’ use of the genome and ‘harming others’. Harms potentially experienced by relatives as a result of the individual’s exercise of a right to test include breach of genetic privacy, violation of their right to determine when, and if, they undertake genetic testing and discrimination. Such harms may justify regulatory intervention, in the event they are recognised; motives driving ‘aggressive’ use of the genome may also be relevant. Each of the above criteria requires clarification, as potential redundancies and tensions exist between them, with different implications affecting different groups of rights holders.

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