Affiliation:
1. Director Clinical Genetics Mount Carmel Health Systems, Division of Genetic and Genomic Medicine Nationwide Children's Hospital Columbus Ohio USA
Abstract
AbstractHistory, law, bioethics, and geocultural influences all have impacted the modern application of informed consent. It is a complex, multilayered process to communicate information and obtain voluntary patient permission before a health care intervention. Lack of provider education about genetic disorders, complexities of advanced genomic technologies, limited time during patient encounters, and low health literacy within a population all represent challenges to effective communication. There is no consensus on how informed consent in reproductive genetics is optimally obtained. Expanded carrier screening (ECS) is purposed to simultaneously test for a large list of diseases in a pan‐ethnic manner. The increased use of ECS is driven by advances in genomic technologies, decreased cost, an improved understanding of single gene disorders, and in support of reproductive autonomy. Academic organizations recommend pretest counseling when patients consider ECS, yet best practice is not established. Ongoing research is needed to determine how optimally implement informed consent given the increased complexity of ECS.
Subject
Genetics (clinical),Obstetrics and Gynecology
Reference54 articles.
1. A Modern History of Informed Consent and the Role of Key Information
2. The legacy of Tuskegee and trust in medical care: is Tuskegee responsible for race differences in mistrust of medical care?;Brandon DT;J Natl Med Assoc,2005
3. The Jeremiah Metzger lecture: a brief history of eugenics in America: implications for modern medicine in the 21st century;Spiegel AM;Trans Am Clin Climatol Assoc,2019
4. The Belmont report: ethical principles and guidelines for the protection of human subjects of research. National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research. Accessed November 22 2022.www.hhs.gov/ohrp/regulations‐and‐policy/belmont‐report/read‐the‐belmont‐report/index.html
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