TY - JOUR
T1 - Ethical issues in genetics and infectious diseases research
T2 - An interdisciplinary expert review
AU - Walker, Alexis
AU - Bonham, Vence L.
AU - Boyce, Angie
AU - Clayton, Ellen Wright
AU - Garcia, Debra
AU - Johnson, Stephanie
AU - Laeyendecker, Oliver
AU - Lewis, Michelle
AU - Margolick, Joseph B.
AU - Mathews, Debra
AU - Parker, Michael J.
AU - Spicer, Paul
AU - Thio, Chloe L.
AU - Geller, Gail
AU - Kahn, Jeffrey
N1 - Funding Information:
This paper is submitted on behalf of the Working Group on ELSI, Biobanks, Infectious Diseases, and Marginalized Groups, with important contributions by Seema Shah, Margaret Battin, Leslie Meltzer Henry, and Shruti Mehta – in addition to the named authors.
Funding Information:
The primary method of this study is a systematic issue-spotting exercise with twenty expert participants, conducted according to validated methods in law and bioethics [8] . This exercise was organized as part of a Center of Excellence in ELSI Research grant funded at Johns Hopkins University by the National Human Genome Research Institute (NHGRI). Issue-spotting is a commonly used method for identifying a range of ethical issues that might arise in the near to mid-term future, based on anticipated developments in law and science. In the current study, the issue-spotting exercise involved the exploration of possible ELSIs by a group of 20 experts from the following fields: public health, law and genomics, biobanking, genetic epidemiology, ID medicine and public health, philosophy, ethics and ID, ethics and genomics, and law and ID. Members of the group represented a diversity of expertise relevant to our focus and are based at universities and organizations across the United States and the United Kingdom.
Publisher Copyright:
© 2021 Elsevier Masson SAS. All rights reserved.
PY - 2021/9
Y1 - 2021/9
N2 - Background: Research in genetics and infectious diseases (ID) presents novel configurations of ethical, legal, and social issues (ELSIs) related to the intersection of genetics with public health regulations and the control of transmissible diseases. Such research includes work both in pathogen genetics and on the ways that human genetics affect responses to ID. This paper identifies and systematizes the unique issues at this intersection, based on an interdisciplinary expert review. Methodology: This paper presents results of a formal issue-spotting exercise among twenty experts in public health, law and genomics, biobanking, genetic epidemiology, ID medicine and public health, philosophy, ethics and ID, ethics and genomics, and law and ID. The focus of the exercise was on the collection, storage, and sharing of genetic information relating to ID. Results: The issue-spotting exercise highlighted the following ELSIs: risks in reporting to government authorities, return of individual research results, and resource allocation – each taking on specific configurations based on the balance between public health and individual privacy/protection. Conclusions: The public health implications of interactions between genomics and ID frame considerations for equity and justice. In the context of the COVID-19 pandemic, these issues are especially pressing.
AB - Background: Research in genetics and infectious diseases (ID) presents novel configurations of ethical, legal, and social issues (ELSIs) related to the intersection of genetics with public health regulations and the control of transmissible diseases. Such research includes work both in pathogen genetics and on the ways that human genetics affect responses to ID. This paper identifies and systematizes the unique issues at this intersection, based on an interdisciplinary expert review. Methodology: This paper presents results of a formal issue-spotting exercise among twenty experts in public health, law and genomics, biobanking, genetic epidemiology, ID medicine and public health, philosophy, ethics and ID, ethics and genomics, and law and ID. The focus of the exercise was on the collection, storage, and sharing of genetic information relating to ID. Results: The issue-spotting exercise highlighted the following ELSIs: risks in reporting to government authorities, return of individual research results, and resource allocation – each taking on specific configurations based on the balance between public health and individual privacy/protection. Conclusions: The public health implications of interactions between genomics and ID frame considerations for equity and justice. In the context of the COVID-19 pandemic, these issues are especially pressing.
KW - Genetics
KW - Infectious diseases
KW - Justice
KW - Privacy
KW - Resource allocation
KW - Return of research results
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U2 - 10.1016/j.jemep.2021.100684
DO - 10.1016/j.jemep.2021.100684
M3 - Article
C2 - 34263019
AN - SCOPUS:85122311267
SN - 2352-5525
VL - 18
JO - Ethics, Medicine and Public Health
JF - Ethics, Medicine and Public Health
M1 - 100684
ER -