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Journal of Health Care Law and Policy

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Karen Rothenberg, genetic testing, medical ethics


Health Law and Policy | Law | Medical Jurisprudence


Karen is also a zealous advocate in the very best sense of the word. After Struewing's article appeared, she wrote an editorial that appeared in multiple newspapers arguing that women with these variants should not lose their insurance. She became deeply involved in the National Action Plan for Breast Cancer, a powerful grass roots organization. Additionally, she became involved at the National Institutes of Health and addressed, often in leadership roles, such issues to develop strategies to prevent genetic discrimination for individuals with variants that increased the risk of developing cancer, to create tools to obtain meaningful informed consent for research, and to govern the use of biological specimens. Her work laid the foundation for the passage of the Genetic Information Nondiscrimination Act as well as the ongoing debate about use of biological specimens for research, most recently instantiated in the changes to the Regulations for the Protection of Human Research Participants that are currently going into effect.



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