Seema Shah, JD
Seema Shah, JD, associate professor of pediatrics at the University of Washington and faculty member in the Treuman Katz Center for Pediatric Bioethics, is an expert in the fields of pediatrics and global health research ethics, as well as on ethical issues in the determination of death. After attending Stanford University, she completed a two-year fellowship in bioethics at the National Institutes of Health (NIH) Clinical Center and returned to Stanford for legal training. Before coming to Seattle Children’s, she was on faculty at the NIH in the Department of Bioethics, with a joint appointment at the Division of AIDS.
During her nine years at NIH, Shah served as an ethics consultant for the Division of AIDS and was involved in more than 20 ethics training workshops with members of review boards, ministries of health, international organizations, researchers and research participants in over 11 low- and middle-income countries. In 2011, she became the head of the section on multinational research ethics at the NIH Department of Bioethics. This experience exposed her to the challenges involved with research in low- and middle-income countries and required working with diverse stakeholders on controversial issues – and informs her research to this date.
One of her ongoing research projects is to identify barriers to research participation of adolescents engaging in behaviors that put them at increased risk for becoming infected with HIV. Despite recent gains against the HIV epidemic in general, in many parts of world the adolescent HIV epidemic is still growing. Yet many NIH-funded studies for HIV prevention have difficulty recruiting and retaining adolescent participants. Many people assume that adolescents don’t take part in research because they don’t want their parents to know that they are having sex or to find out about their sexual orientation. It’s also possible, though, that adolescents face other barriers such as not understanding what research is, failing to trust researchers or finding it difficult to get to a research site during school hours.
To get to the bottom of this important issue, Shah is conducting a study in adolescents in the U.S. and South Africa to see whether parental permission requirements are in fact the main barrier that prevents adolescents from participating in HIV prevention research. She is also beginning to consider when it might be legally and ethically acceptable for researchers to enroll adolescents in HIV prevention research without getting parental permission.
A newer focus for Shah’s research is how our conventional approaches to oversight of research should be rethought in light of emerging infectious diseases, such as Zika virus. She is chairing an NIH committee to address the ethics of Zika virus human challenge trials. These controversial trials would enroll healthy adult volunteers who are then deliberately exposed to Zika virus to rapidly test experimental vaccine candidates (particularly vaccines that use live attenuated viruses). This work requires tackling unresolved issues on the cutting edge of science and ethics. “How do we weigh the value of this research to help future patients, such as children who might suffer from microcephaly and other neurological complications, against the risks to the healthy research volunteers – when we don’t know what all the risks might be?” asks Shah. One integral part of the process will be to maintain public trust and transparency in research. “To preserve trust and determine if and under what conditions such a trial might be ethically acceptable, we are having in-depth discussions with a wide range of experts and stakeholders,” adds Shah.
Shah’s move to Seattle Children’s gives her the opportunity to further integrate her interests in pediatrics and global health. “I’ve been impressed by the high-quality clinical care here and with my colleagues’ depth of clinical and empirical expertise,” she says. “It informs my work and makes it stronger.”
The Treuman Katz Center for Pediatric Bioethics is excited to have Shah join its faculty.
I have known Seema for 15 years, and have seen her career blossom. She is one the few in bioethics who has skills in research ethics consultation, as well as clinical ethics consultation, and who is comfortable with both empirical and conceptual methods in bioethics. Seema has particular interest in the ethical issues that arise when conducting research in resource-poor settings to address critical health needs. Seema will be a great resource for our fellows and faculty members whose scholarship addresses topics at the boundary of clinical care and research.
Shah and her family are enjoying Seattle and its impressive natural beauty – “although it may be lost on the kids right now,” she admits with a laugh, referring to her 4-year-old and new baby. “And we’re learning that what counts as toddler-friendly here is maybe a bit different than the East Coast!”
Representative Research Papers