The Ethics of Large-Scale Genomic Research

Berkman, Benjamin E.; Shapiro, Zachary E.; Eckstein, Lisa; Pike, Elizabeth R.

doi:10.1007/978-3-319-28422-4_5

Cited by 6 publications

(7 citation statements)

References 28 publications

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“…Under GINA, an individual’s genetic information encompasses family history up to and including fourth-degree relatives 51 . Despite its expansion of protections for individuals at risk for genetic disorders, GINA has been criticized for a number of shortcomings 52 . Specifically, it does not cover life insurance, disability insurance, and long-term care insurance, and employers may still make conditional offers of employment contingent on employee disclosure of all health records, per the Americans with Disabilities Act 53 .…”

Section: Privacy and Confidentialitymentioning

confidence: 99%

“…51 Despite its expansion of protections for individuals at risk for genetic disorders, GINA has been criticized for a number of shortcomings. 52 Specifically, it does not cover life insurance, disability insurance, and long-term care insurance, and employers may still make conditional offers of employment contingent on employee disclosure of all health records, per the Americans with Disabilities Act. 53 Furthermore, the law applies only to individuals at risk for developing a disease with genetic basis, not to patients with known, existing disease.…”

Section: Privacy and Confidentialitymentioning

confidence: 99%

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Ethical Issues in Contemporary Clinical Genetics

Braverman

Shapiro

Bernstein

2018

Mayo Clinic Proceedings: Innovations, Quality & Outcomes

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As genetic sequencing capabilities become more powerful and costs decline, the reach of genomics is expanding beyond research laboratories to the wards, outpatient clinics, and, with the marketing of direct-to-consumer testing services, patients’ homes. Increasingly, patients receiving various diagnoses—from cancer to cardiomyopathy—can reasonably expect to have conversations with their providers about indications for genetic testing. In this dynamic context, a grasp of the ethical principles and history underlying clinical genetics will provide clinicians with the tools to guide their practice and help patients navigate complex medical-psychosocial terrain. This article provides an overview of the salient ethical concerns pertaining to clinical genetics. The subject is approached with an emphasis on clinical practice, but consideration is also given to research. The review is organized around the temporal and informational sequence of issues commonly arising during the course of pretesting, testing, and posttesting phases of patient care. Drawing from medical, legal, and historical perspectives, this review covers the following topics: (1) informed consent, (2) return of results, and (3) privacy and confidentiality, and intends to equip readers with an appropriate foundation to apply ethical principles to genetic testing paradigms with an understanding of the contextual landscape against which these situations occur.

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Section: Privacy and Confidentialitymentioning

confidence: 99%

Section: Privacy and Confidentialitymentioning

confidence: 99%

Ethical Issues in Contemporary Clinical Genetics

Braverman

Shapiro

Bernstein

2018

Mayo Clinic Proceedings: Innovations, Quality & Outcomes

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“…Furthermore, even if the risk of reidentification were higher, there is scant evidence that such exposure would lead to tangible harms. 11 This is not to dismiss privacy concerns as unimportant but rather to suggest the need for a clearheaded assessment of privacy risks when they are the basis for requiring pediatric reconsent.…”

Section: Dana Howard Phd Commentsmentioning

confidence: 99%

Reconsidering the Need for Reconsent at 18

2018

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The prevalence of research with biological specimens has led to a debate over what type of consent is needed to obtain biological specimens from minors and store them for future studies. In most cases, parental permission is needed to obtain samples from minors. In addition, almost all commentators and guidelines maintain that researchers need the consent of the donors if they want to continue to store the samples and make them available for future studies after the donors reach the age of majority. In this Ethics Rounds, we argue that this near-consensus view is mistaken on the grounds that the agreement of the parents at the time of obtaining samples provides sufficient permission to store them and use them in research even after the donors turn 18 years old.

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“…In light of the above, forensic DNA phenotyping (FDP), although a promising technique, raises multiple, not only scientific, but also ethical and legislative issues [217,218].…”

Section: Markers For Supplemental Informationmentioning

confidence: 99%

Forensic DNA Technological Advancements as an Emerging Perspective on Medico-Legal Autopsy: A Mini Review

Pádár¹,

Zenke²,

Kozma³

2018

Post Mortem Examination and Autopsy - Current Issues From Death to Laboratory Analysis

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The importance of biological traces and evidences related to a criminal matter has been recognized for a long time. The examination of the expression of genetic polymorphism has been an integral part of the multidisciplinary field of medico-legal autopsy for over a century. Since the initial application of blood group antigens for personalization of a putative perpetrator in a murder case, the discipline of forensic genetics has evolved as a standard of forensic sciences. The real breakthrough, the application of molecular tools and processes for the in-vitro replication of genetic substances, has increasingly allowed the exploitation of advances of molecular genetics for both forensic and criminal investigations. Although there are certainly many more applications and scientific fields in the medico-legal arena, the relatively fast progress of genetics, which has accelerated recently with state-of-art technologies, can provide ever more relevant information in relation to a corpse or the cause and manner that resulted in the corpse for autopsy. This topic concerns the currently accepted forensic DNA technology, and the last section reviews commonly used markers for nuclear and mitochondrial DNA analysis as well as ongoing research. This review also focuses on the increasingly important non-human sources of DNA, and shortly covers the main aspects of animal forensic DNA examination.

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The Ethics of Large-Scale Genomic Research

Cited by 6 publications

References 28 publications

Ethical Issues in Contemporary Clinical Genetics

Ethical Issues in Contemporary Clinical Genetics

Reconsidering the Need for Reconsent at 18

Forensic DNA Technological Advancements as an Emerging Perspective on Medico-Legal Autopsy: A Mini Review

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