Medicine and Health Sciences Commons^™

Reimagining Disability: The Screening Of Donor Gametes And Embryos In Ivf, Isabel Karpin, Roxanne Mykitiuk

Articles & Book Chapters

In this article,we examine how disability is figured in the imaginaries that are given shape by the reproductive projects and parental desires facilitated by the bio-medical techniques and practices of assisted reproductive technologies (ARTs) that involve selection and screening for disability. We investigate how some users of ARTs understand and deploy these imaginaries in ways that are both concordant with and resistant to the understanding of disability embedded within the broader sociotechnical and social imaginaries. It is through users’ deliberations, choices, responses, and expectations that we come to understand how these imaginaries are perpetuated and resisted, and how maintaining them …

Advanced Cancer Patient Preferences For Receiving Molecular Profiling Results, Megan Best, Phyllis Butow, Chris Jacobs, Ilona Juraskova, Jacqueline Savard, Bettina Meiser, David Goldstein, Mandy Ballinger, Nicci Bartley, Christine Napier, Grace Davies, David Thomas, Kathy Tucker, Timothy Schlub, Ainsley J. Newson

IES Papers and Journal Articles

Objective: This study aimed to discern preferences for receiving somatic molecular profiling (MP) results in cancer patients who have given consent to undergo testing.

Methods: We conducted a mixed‐methods study to explore patients’ views on which MP results they would like to receive and why. Advanced cancer patients (n=1299) completed questionnaires after giving consent to participate in a parent genomics study and undergoing MP. A subset of patients (n=20) participated in qualitative interviews.

Results: Almost all (96%) participants were interested in receiving results which would direct cancer treatment (i.e. were actionable). A smaller majority wanted to access results which were …

Ethical Perspectives Of Direct-To-Consumer Genetic Testing, Pawan Acharya, Rupesh Gautam

Journal of Health Ethics

Direct-to-consumer (DTC) genetic testing, which evolved from genomics is not free from controversies and ethical dilemmas. Conduction of genetic testing without direct communication between the users and certified medical professionals has aroused many ethical concerns. We discuss some ethical dilemmas surrounding DTC genetic testing in terms of quality assurance of the test, information communication process of the result, confidentiality of test result and the right to privacy, cost and price regulations, and user safety and harm mitigation. DTC genetic testing lies in the middle of a clash between liberal trade policies and state’s regulations as a case of extreme paternalism. …

Ethical Considerations Of Genetic Presymptomatic Testing For Huntington's Disease, Alberto Coustasse, Alicia Pekar, Andrew Sikula Sr., Sue Lurie

Alberto Coustasse, DrPH, MD, MBA, MPH

The aim of this literature review was to determine if there is adequate ethical justification for presymptomatic genetic testing on potential Huntington's disease patients. Huntington's disease is a neurological genetic disorder characterized by midlife onset which consists of cognitive, physical, and emotional deterioration. Although genetic testing has traditionally been guided by the principle of autonomy, severe psychological consequences such as depression, anxiety, survival guilt, and suicide have complicated the ethical issue of providing a presymptomatic yet definitive diagnosis for an incurable disease. An analysis of available articles yielded inconclusive findings, namely due to insufficient evidence, self-selection bias of test participants, …

Ethical Considerations Of Genetic Presymptomatic Testing For Huntington's Disease, Alberto Coustasse, Alicia Pekar, Andrew Sikula Sr., Sue Lurie

Andrew Sikula, Sr.

The aim of this literature review was to determine if there is adequate ethical justification for presymptomatic genetic testing on potential Huntington's disease patients. Huntington's disease is a neurological genetic disorder characterized by midlife onset which consists of cognitive, physical, and emotional deterioration. Although genetic testing has traditionally been guided by the principle of autonomy, severe psychological consequences such as depression, anxiety, survival guilt, and suicide have complicated the ethical issue of providing a presymptomatic yet definitive diagnosis for an incurable disease. An analysis of available articles yielded inconclusive findings, namely due to insufficient evidence, self-selection bias of test participants, …

Attitudes Of Parents At Risk Of Inheriting Li-Fraumeni Syndrome Towards Predictive Genetic Testing In Their Minor-Aged Children., Leslie A. Newman

Dissertations & Theses (Open Access)

Li-Fraumeni Syndrome (LFS) is a hereditary cancer syndrome which predisposes individuals to cancer beginning in childhood. These risks are spread across a lifetime, from early childhood to adulthood. Mutations in the p53 tumor suppressor gene are known to cause the majority of cases of LFS. The risk for early onset cancer in individuals with Li-Fraumeni Syndrome is high. Studies have shown that individuals with LFS have a 90% lifetime cancer risk. Children under 18 have up to a 15% chance of cancer development. Effectiveness of cancer screening and management in individuals with Li-Fraumeni Syndrome is unclear. Screening for LFS-associated cancers …

Ethical Considerations Of Genetic Presymptomatic Testing For Huntington's Disease, Alberto Coustasse, Alicia Pekar, Andrew Sikula Sr., Sue Lurie

Management Faculty Research

The aim of this literature review was to determine if there is adequate ethical justification for presymptomatic genetic testing on potential Huntington's disease patients. Huntington's disease is a neurological genetic disorder characterized by midlife onset which consists of cognitive, physical, and emotional deterioration. Although genetic testing has traditionally been guided by the principle of autonomy, severe psychological consequences such as depression, anxiety, survival guilt, and suicide have complicated the ethical issue of providing a presymptomatic yet definitive diagnosis for an incurable disease. An analysis of available articles yielded inconclusive findings, namely due to insufficient evidence, self-selection bias of test participants, …

Editor's Note, Padraig O'Malley

New England Journal of Public Policy

This issue of the journal can be summed up in one word: provocative. At least two articles break new ground. Anthony Robbins and Phyllis Freeman explore the ways in which environmentally oriented public health is uniquely suited to help organized medical care in providing health and in restraining expenditures. Janet Farrell Smith challenges policymakers to look at what will soon become a hot issue — the medical use of genetic information. The genetic testing of children, now becoming prevalent in the foster care and pre-adoptive stage in order to facilitate placement and satisfy prospective parents’ “need to know,” is already …

Genetic Testing: A Cautionary Tale Of Foster And Pre-Adoptive Children, Janet Farrell Smith

New England Journal of Public Policy

Genetic testing of children in the foster care and pre-adoptive stage may be thought to facilitate child placement and satisfy prospective parents’ need to know. But, the policy analysis in this paper recommends great caution, especially given eugenic attitudes in the history of adoption and the risk of creating a second tier of un-adoptable children. Testing should be done only when two conditions are satisfied: test information is medically useful for childhood onset diseases; test information supports and does not diminish the child’s access to present and future healthcare (or the child’s future insurability). Public policy needs to make a …

Genetic Testing's "Soft Underbelly", M. Therese Lysaught

M. Therese Lysaught

No abstract provided.

What Should The Law Say About Disclosure Of Genetic Information To Relatives?, Ellen Wright Clayton

Journal of Health Care Law and Policy

No abstract provided.

Family Disclosure In Genetic Testing For Cancer Susceptibility: Determinants And Consequences, Caryn Lerman, Beth N. Peshkin, Chanita Hughes, Claudine Isaacs

Journal of Health Care Law and Policy

No abstract provided.

The Argument Against A Physician's Duty To Warn For Genetic Diseases: The Conflicts Created By Safer V. Estate Of Pack, Angela Liang

Journal of Health Care Law and Policy

No abstract provided.

Ethical Responsibilities Of Patients And Clinical Geneticists, Allen Buchanan

Journal of Health Care Law and Policy

No abstract provided.

The Law's Response To Reproductive Genetic Testing: Questioning Assumptions About Choice, Causation And Control, Karen H. Rothenberg

Faculty Scholarship

No abstract provided.