Sara Chandros Hull, Ph.D.
NIH IRB Internship Program
Office of Scientific Core Facilities
Bioethics Core
she/her(s)
B.A. Brandeis University
Ph.D. Johns Hopkins University
Biography
Sara Chandros Hull, Ph.D., who has worked at the NIH since 1999, holds joint appointments as director of the Bioethics Core of the National Human Genome Research Institute (NHGRI); faculty in the Department of Bioethics, where her research and capacity building interests focus primarily on the intersections between research ethics and genomic research; and Chair of the NIH Intramural Institutional Review Board. Dr. Hull recently completed a detail with the NIH Tribal Health Research Office and continues to collaborate on the development of policies, guidance, and training initiatives to enhance the ethical conduct of Tribal research.
Dr. Hull received her undergraduate degree in molecular cell biology and genetics from Brandeis University and earned a PhD from the Johns Hopkins School of Hygiene and Public Health/Program in Law, Ethics and Health in 1999. Her graduate training focused on social science research methods to conduct empirical research in bioethics and public health policy. During her graduate studies, Dr. Hull also worked on the staff of President Clinton's Advisory Committee on Human Radiation Experiments.
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Biography
Sara Chandros Hull, Ph.D., who has worked at the NIH since 1999, holds joint appointments as director of the Bioethics Core of the National Human Genome Research Institute (NHGRI); faculty in the Department of Bioethics, where her research and capacity building interests focus primarily on the intersections between research ethics and genomic research; and Chair of the NIH Intramural Institutional Review Board. Dr. Hull recently completed a detail with the NIH Tribal Health Research Office and continues to collaborate on the development of policies, guidance, and training initiatives to enhance the ethical conduct of Tribal research.
Dr. Hull received her undergraduate degree in molecular cell biology and genetics from Brandeis University and earned a PhD from the Johns Hopkins School of Hygiene and Public Health/Program in Law, Ethics and Health in 1999. Her graduate training focused on social science research methods to conduct empirical research in bioethics and public health policy. During her graduate studies, Dr. Hull also worked on the staff of President Clinton's Advisory Committee on Human Radiation Experiments.
Scientific Summary
Dr. Hull's research interests focus primarily on the intersection between research ethics and new technological developments. Ongoing projects focus on secondary genomic research findings, informed consent and datasharing for research for genomic research, the role and limits of centralized Institutional Reveiw Board (IRB) review of multisite research, diversifying genomic research and clinical/diagnostic tools, and developing collaborative research ethics training programs with American Indian and Alaska Native Tribal IRBs and research review committees.
Dr. Hull conducts her research through a collaborative venture between the National Human Genome Research Institute (NHGRI) and the NIH Clinical Center's Department of Bioethics. The Section on the Ethics of Genetics and Emerging Technologies addresses a range of ethical issues, particularly those relevant to research with collections of human biological samples and data, disclosure of genetic results to study participants and clinical patients; legal and regulatory issues raised by evolving genomic sequencing technology; and issues raised by use of genetics in reproduction and pediatric care.
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Scientific Summary
Dr. Hull's research interests focus primarily on the intersection between research ethics and new technological developments. Ongoing projects focus on secondary genomic research findings, informed consent and datasharing for research for genomic research, the role and limits of centralized Institutional Reveiw Board (IRB) review of multisite research, diversifying genomic research and clinical/diagnostic tools, and developing collaborative research ethics training programs with American Indian and Alaska Native Tribal IRBs and research review committees.
Dr. Hull conducts her research through a collaborative venture between the National Human Genome Research Institute (NHGRI) and the NIH Clinical Center's Department of Bioethics. The Section on the Ethics of Genetics and Emerging Technologies addresses a range of ethical issues, particularly those relevant to research with collections of human biological samples and data, disclosure of genetic results to study participants and clinical patients; legal and regulatory issues raised by evolving genomic sequencing technology; and issues raised by use of genetics in reproduction and pediatric care.
Publications
Hull SC, Brody L, Sterling R. (2023) Guest Editorial: Getting it Right: How Public Engagement Might (and Might Not) Help Us Determine What is Equitable in Genomics and Precision Medicine. American Journal of Bioethics. 23:7, 5-8. [PubMed]
Spector-Bagdady K, Fernandez Lynch H, Bierer BE, Gelinas L, Hull SC, Magnus D, Meyer MN, Sharp RR, Sugarman J, Wilfond BS, Yearby R, Mohapatra S (2022) Allocation of Opportunities to Participate in Clinical Trials during the Covid-19 Pandemic and Other Public Health Emergencies, Hastings Center Report 52: 51-58. [PubMed]
Hull SC, Nez FL, Blome JM (2021) Solidarity as an Aspirational Basis for Partnership with Tribal Communities, American Journal of Bioethics. 21(10):14-17. [PubMed]
Berkman BE, Mastroianni AC, Jamal L, Solis C, Taylor HA, Hull SC (2021) The Ethics of Repurposing Previously Collected Research Biospecimens in an Infectious Disease Pandemic, Ethics & Human Research. 43(2):2-18. [PubMed]
Meyer M, Gelinas L, Bierer B, Hull SC, Joffe S; Magnus D, Mohapatra S, Sharp R, Spector-Bagdady K Sugarman J, Wilfond B, Fernandez Lynch H (2021) An Ethics Framework for Consolidating and Prioritizing COVID-19 Clinical Trials, Clinical Trials: Journal of the Society for Clinical Trials. 18(2):226-233. [PubMed]
Desine S, Hollister BM, Abdallah KE, Persaud A, Hull SC, Bonham VL (2020) The Meaning of Informed Consent: Genome Editing Clinical Trials for Sickle Cell Disease, American Journal of Bioethics: Empirical Bioethics, 11(4):195-207. [PubMed]
Hiratsuka VY, Hahn MJ, Woodbury RB, Hull SC, Wilson DR, Bonham VL, Dillard DA, and The Alaska Native Genomics Research Workshop Group, et al. (2020) Alaska Native genomic research: perspectives from Alaska Native leaders, federal staff, and biomedical researchers. Genet Med. 22, 1935–1943. [PubMed]
Hull SC (2019) Changing the Conversation about The Ethics of Genomics and Health Disparities Research with American Indian and Alaska Native Communities: A Report from the Field. Journal of Health Care for the Poor and Underserved. 30(4) Supplement, 21-26. [PubMed]
Hull SC and Wilson D. Beyond Belmont: Ensuring Respect for AI/AN Communities Through Tribal IRBs, Laws, and Policies. American Journal of Bioethics, 17(7):60-62. 2017. [PubMed]
Doernberg S and Hull SC. Harms of Deception in FMR1 Premutation Genotype-Driven Recruitment. American Journal of Bioethics, 17(4):62-63. 2017. [PubMed]
Chen S, Berkman BE, Hull SC. Recontacting Participants for Expanded Uses of Existing Samples and Data: A Case Study. Genetics in Medicine, Epub ahead of print. 2017. [PubMed]
Bayefsky MJ, White A, Wakim P, Hull SC, Wasserman D, Chen S, and Berkman BE. Views of American OB/GYNs on the ethics of prenatal whole genome sequencing. Prenatal Diagnosis, 36(13):1250-1256. 2016. [PubMed]
Koretsky M, Bonham VL, Berkman BE, Kruszka P, Adeyemo A, Muenke M, Hull SC. Towards a More Representative Morphology: Clinical and Ethical Considerations for Including Diverse Populations in Diagnostic Genetic Atlases. Genetics in Medicine, 18(11):1069-74. 2016. [PubMed]
Darnell AJ, Austin H, Bluemke DA, Cannon RO 3rd, Fischbeck K, Gahl W, Goldman D, Grady C, Greene MH, Holland SM, Hull SC, Porter FD, Resnick D, Rubinstein WS, Biesecker LG. A Clinical Service to Support the return of Secondary Genomic Findings in Human Research. Am J Hum Genet, 98(3):435-41. 2016. [PubMed]
Gliwa C, Yurkiewicz I, Lehmann LS, Hull SC, Jones N, Berkman BE. Institutional Review Board Perspectives on Obligations to Disclose Genetic Incidental Findings to Research Participants. Genetics in Medicine, 18(7):705-11. 2016. [PubMed]
Freeman B, Butler K, Bolcic-Jankovic D, Clarridge B, Kennedy C, LeBlanc J, Hull SC. Surrogate Receptivity to Participation in Critical Illness Genetic Research. CHEST, 147(4):979-988. 2015. [PubMed]
Berkman BE and Hull SC. The "Right Not-to-know" in the Genomic Era: Time to Break from Tradition? Am J Bioeth, 14(3):28-31. 2014. [PubMed]
Hull SC and Berkman BE. Ahead of the Curve: Grappling with Genomic Incidental Findings in the Clinical Realm. CHEST, 145(2):226-230. 2014. [PubMed]
Lomax GP, Hull SC, Lowenthal J, Rao M, Isasi R. The DISCUSS Project: Induced pluripotent stem cell lines from previously collected research biospecimens and informed consent. Points to Consider. Stem Cells Transl Med 2, (10):727-30. 2013. [PubMed]
Lowenthal J and Hull SC. Framing the "Right to Withdraw" in the Use of Biospecimens for iPSC Research. Ethics in Biology, Engineering, and Medicine: An International Journal, 4(1):1-14. 2013. [PDF]
Hull SC, Colloca L, Avins A, Gordon NP, Somkin CP, Silver P, Kaptchuk TJ, Miller FG. A Survey of Patients' Attitudes about the Use of Placebo Treatments. BMJ, 347:f3757. 2013. [PubMed]
Abdul-Karim R, Berkman BE, Wendler D, Rid A, Khan J, Badgett T, Hull SC. Disclosure of incidental findings from next-generation sequencing in pediatric genomic research. Pediatrics, 131(3):564-71. 2013. [PubMed]
Donley G, Hull SC, Berkman BE. Prenatal Whole Genome Sequencing: Just Because We Can, Should We? Hastings Cent Rep, 42(4):28-40. 2012. [PubMed]
Lowenthal J, Lipnick S, Rao M, Hull SC. Specimen Collection for Induced Pluripotent Stem Cell Research: Harmonizing the Approach to Informed Consent. Stem Cells Transl Med, 1(5):409-421. 2012. [PubMed]
Chan B, Fabio F, Eidem H, Biesecker L, Hull SC, Berkman BE. Genomic Inheritance: A Case for Disclosing Research Results Deceased Participants' Relatives. Am J Bioeth, 12(10):1-8. 2012. [PubMed]
Lowenthal J, Hull SC, Pearson SD. The Ethics of Early Evidence: Preparing for a Possible Breakthrough in Alzheimer's Disease. NEJM. 367(6): 488-90. [PubMed]
Tabor HK, Berkman BE, Hull SC, Bamshad MJ. Genomics Really Gets Personal: How Exome and Whole Genome Sequencing Challenge the Ethical Framework of Human Genetics Research. Am J Med Genet A, 155A(12): 2916-24. 2011. [PubMed]
Goldenberg AJ, Hull SC, Wilfond BS, Sharp RR. Patient Perspectives on Group Benefits and Harms in Genetic Research. Public Health Genomics, 2011;14(3):135-42. 2011. [PubMed]
Goldenberg AJ, Hull SC, Botkin JR, Wilfond BS. Pediatric Biobanks: Approaching Informed Consent for Continuing Research after Children Grow Up. J Pediatr, 155(4):578-83. 2009. [PubMed]
Hull SC, Sharp RR, Botkin JR, Brown M, Hughes M, Schwinn D, Sankar P, Sugarman J, Bolcic-Jankovic D, Clarridge BR, Wilfond BS. Patients' Views on Identifiability of Samples and Informed Consent for Genetic Research. Amer J of Bioeth, 8(10): 62-70. 2008. [PubMed]
Leib JR, Gollust SE, Hull SC, Wilfond BS. Carrier Screening Panels for Ashkenazi Jews: Is More Better? Genetics In Medicine. 7(3):185-90. 2005. [PubMed]
Hull SC, Glanz K, Steffen A, Wilfond. "Recruitment Approaches for Family Studies: Attitudes of Index Patients and Their Relatives." IRB: Ethics & Human Research, 26(4): 12-18. 2004. [PubMed]
Hull SC, Gooding H, Klein AP, Warshauer-Baker E, Metosky S, Wilfond BS. Genetic Research Involving Human Biological Materials: A Need to Tailor Consent Forms. IRB: Ethics & Human Research, 26(3): 1-7. 2004. [PubMed]
Gollust SE, Wilfond BS, Hull SC. Direct-to-Consumer Sales of Genetic Services on the Internet. Genetics In Medicine, 5(4):332-337. 2003. [PubMed]
Gollust S, Hull SC, Wilfond B. "The Limitations of Direct-to-Consumer Advertising for Clinical Genetic Testing," JAMA, 288(14): 1762-1766. 2002. [PubMed]
Davis A, Hull SC, Grady C, Wilfond B, and Henderson G. The Invisible Hand in Clinical Research: The Study Coordinator's Critical Role in Human Subjects Protection. Journal of Law, Medicine, and Ethics, 30(3): 411-419. 2002. [PubMed]
Hull SC and Prasad K. Reading Between the Lines: Direct-to-Consumer Advertising of Genetic Testing. Hastings Center Report, 31(3): 33-35 [reprinted in Reproductive Health Matters. 2001;9(18):44-48]. 2001. [PubMed]
Silverman H, Hull SC, and Sugarman J. Variability Among Institutional Review Boards' Decisions Within the Context of a Multi-Center Trial. Critical Care Medicine. 29(2):235-241. 2001. [PubMed]
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Publications
Hull SC, Brody L, Sterling R. (2023) Guest Editorial: Getting it Right: How Public Engagement Might (and Might Not) Help Us Determine What is Equitable in Genomics and Precision Medicine. American Journal of Bioethics. 23:7, 5-8. [PubMed]
Spector-Bagdady K, Fernandez Lynch H, Bierer BE, Gelinas L, Hull SC, Magnus D, Meyer MN, Sharp RR, Sugarman J, Wilfond BS, Yearby R, Mohapatra S (2022) Allocation of Opportunities to Participate in Clinical Trials during the Covid-19 Pandemic and Other Public Health Emergencies, Hastings Center Report 52: 51-58. [PubMed]
Hull SC, Nez FL, Blome JM (2021) Solidarity as an Aspirational Basis for Partnership with Tribal Communities, American Journal of Bioethics. 21(10):14-17. [PubMed]
Berkman BE, Mastroianni AC, Jamal L, Solis C, Taylor HA, Hull SC (2021) The Ethics of Repurposing Previously Collected Research Biospecimens in an Infectious Disease Pandemic, Ethics & Human Research. 43(2):2-18. [PubMed]
Meyer M, Gelinas L, Bierer B, Hull SC, Joffe S; Magnus D, Mohapatra S, Sharp R, Spector-Bagdady K Sugarman J, Wilfond B, Fernandez Lynch H (2021) An Ethics Framework for Consolidating and Prioritizing COVID-19 Clinical Trials, Clinical Trials: Journal of the Society for Clinical Trials. 18(2):226-233. [PubMed]
Desine S, Hollister BM, Abdallah KE, Persaud A, Hull SC, Bonham VL (2020) The Meaning of Informed Consent: Genome Editing Clinical Trials for Sickle Cell Disease, American Journal of Bioethics: Empirical Bioethics, 11(4):195-207. [PubMed]
Hiratsuka VY, Hahn MJ, Woodbury RB, Hull SC, Wilson DR, Bonham VL, Dillard DA, and The Alaska Native Genomics Research Workshop Group, et al. (2020) Alaska Native genomic research: perspectives from Alaska Native leaders, federal staff, and biomedical researchers. Genet Med. 22, 1935–1943. [PubMed]
Hull SC (2019) Changing the Conversation about The Ethics of Genomics and Health Disparities Research with American Indian and Alaska Native Communities: A Report from the Field. Journal of Health Care for the Poor and Underserved. 30(4) Supplement, 21-26. [PubMed]
Hull SC and Wilson D. Beyond Belmont: Ensuring Respect for AI/AN Communities Through Tribal IRBs, Laws, and Policies. American Journal of Bioethics, 17(7):60-62. 2017. [PubMed]
Doernberg S and Hull SC. Harms of Deception in FMR1 Premutation Genotype-Driven Recruitment. American Journal of Bioethics, 17(4):62-63. 2017. [PubMed]
Chen S, Berkman BE, Hull SC. Recontacting Participants for Expanded Uses of Existing Samples and Data: A Case Study. Genetics in Medicine, Epub ahead of print. 2017. [PubMed]
Bayefsky MJ, White A, Wakim P, Hull SC, Wasserman D, Chen S, and Berkman BE. Views of American OB/GYNs on the ethics of prenatal whole genome sequencing. Prenatal Diagnosis, 36(13):1250-1256. 2016. [PubMed]
Koretsky M, Bonham VL, Berkman BE, Kruszka P, Adeyemo A, Muenke M, Hull SC. Towards a More Representative Morphology: Clinical and Ethical Considerations for Including Diverse Populations in Diagnostic Genetic Atlases. Genetics in Medicine, 18(11):1069-74. 2016. [PubMed]
Darnell AJ, Austin H, Bluemke DA, Cannon RO 3rd, Fischbeck K, Gahl W, Goldman D, Grady C, Greene MH, Holland SM, Hull SC, Porter FD, Resnick D, Rubinstein WS, Biesecker LG. A Clinical Service to Support the return of Secondary Genomic Findings in Human Research. Am J Hum Genet, 98(3):435-41. 2016. [PubMed]
Gliwa C, Yurkiewicz I, Lehmann LS, Hull SC, Jones N, Berkman BE. Institutional Review Board Perspectives on Obligations to Disclose Genetic Incidental Findings to Research Participants. Genetics in Medicine, 18(7):705-11. 2016. [PubMed]
Freeman B, Butler K, Bolcic-Jankovic D, Clarridge B, Kennedy C, LeBlanc J, Hull SC. Surrogate Receptivity to Participation in Critical Illness Genetic Research. CHEST, 147(4):979-988. 2015. [PubMed]
Berkman BE and Hull SC. The "Right Not-to-know" in the Genomic Era: Time to Break from Tradition? Am J Bioeth, 14(3):28-31. 2014. [PubMed]
Hull SC and Berkman BE. Ahead of the Curve: Grappling with Genomic Incidental Findings in the Clinical Realm. CHEST, 145(2):226-230. 2014. [PubMed]
Lomax GP, Hull SC, Lowenthal J, Rao M, Isasi R. The DISCUSS Project: Induced pluripotent stem cell lines from previously collected research biospecimens and informed consent. Points to Consider. Stem Cells Transl Med 2, (10):727-30. 2013. [PubMed]
Lowenthal J and Hull SC. Framing the "Right to Withdraw" in the Use of Biospecimens for iPSC Research. Ethics in Biology, Engineering, and Medicine: An International Journal, 4(1):1-14. 2013. [PDF]
Hull SC, Colloca L, Avins A, Gordon NP, Somkin CP, Silver P, Kaptchuk TJ, Miller FG. A Survey of Patients' Attitudes about the Use of Placebo Treatments. BMJ, 347:f3757. 2013. [PubMed]
Abdul-Karim R, Berkman BE, Wendler D, Rid A, Khan J, Badgett T, Hull SC. Disclosure of incidental findings from next-generation sequencing in pediatric genomic research. Pediatrics, 131(3):564-71. 2013. [PubMed]
Donley G, Hull SC, Berkman BE. Prenatal Whole Genome Sequencing: Just Because We Can, Should We? Hastings Cent Rep, 42(4):28-40. 2012. [PubMed]
Lowenthal J, Lipnick S, Rao M, Hull SC. Specimen Collection for Induced Pluripotent Stem Cell Research: Harmonizing the Approach to Informed Consent. Stem Cells Transl Med, 1(5):409-421. 2012. [PubMed]
Chan B, Fabio F, Eidem H, Biesecker L, Hull SC, Berkman BE. Genomic Inheritance: A Case for Disclosing Research Results Deceased Participants' Relatives. Am J Bioeth, 12(10):1-8. 2012. [PubMed]
Lowenthal J, Hull SC, Pearson SD. The Ethics of Early Evidence: Preparing for a Possible Breakthrough in Alzheimer's Disease. NEJM. 367(6): 488-90. [PubMed]
Tabor HK, Berkman BE, Hull SC, Bamshad MJ. Genomics Really Gets Personal: How Exome and Whole Genome Sequencing Challenge the Ethical Framework of Human Genetics Research. Am J Med Genet A, 155A(12): 2916-24. 2011. [PubMed]
Goldenberg AJ, Hull SC, Wilfond BS, Sharp RR. Patient Perspectives on Group Benefits and Harms in Genetic Research. Public Health Genomics, 2011;14(3):135-42. 2011. [PubMed]
Goldenberg AJ, Hull SC, Botkin JR, Wilfond BS. Pediatric Biobanks: Approaching Informed Consent for Continuing Research after Children Grow Up. J Pediatr, 155(4):578-83. 2009. [PubMed]
Hull SC, Sharp RR, Botkin JR, Brown M, Hughes M, Schwinn D, Sankar P, Sugarman J, Bolcic-Jankovic D, Clarridge BR, Wilfond BS. Patients' Views on Identifiability of Samples and Informed Consent for Genetic Research. Amer J of Bioeth, 8(10): 62-70. 2008. [PubMed]
Leib JR, Gollust SE, Hull SC, Wilfond BS. Carrier Screening Panels for Ashkenazi Jews: Is More Better? Genetics In Medicine. 7(3):185-90. 2005. [PubMed]
Hull SC, Glanz K, Steffen A, Wilfond. "Recruitment Approaches for Family Studies: Attitudes of Index Patients and Their Relatives." IRB: Ethics & Human Research, 26(4): 12-18. 2004. [PubMed]
Hull SC, Gooding H, Klein AP, Warshauer-Baker E, Metosky S, Wilfond BS. Genetic Research Involving Human Biological Materials: A Need to Tailor Consent Forms. IRB: Ethics & Human Research, 26(3): 1-7. 2004. [PubMed]
Gollust SE, Wilfond BS, Hull SC. Direct-to-Consumer Sales of Genetic Services on the Internet. Genetics In Medicine, 5(4):332-337. 2003. [PubMed]
Gollust S, Hull SC, Wilfond B. "The Limitations of Direct-to-Consumer Advertising for Clinical Genetic Testing," JAMA, 288(14): 1762-1766. 2002. [PubMed]
Davis A, Hull SC, Grady C, Wilfond B, and Henderson G. The Invisible Hand in Clinical Research: The Study Coordinator's Critical Role in Human Subjects Protection. Journal of Law, Medicine, and Ethics, 30(3): 411-419. 2002. [PubMed]
Hull SC and Prasad K. Reading Between the Lines: Direct-to-Consumer Advertising of Genetic Testing. Hastings Center Report, 31(3): 33-35 [reprinted in Reproductive Health Matters. 2001;9(18):44-48]. 2001. [PubMed]
Silverman H, Hull SC, and Sugarman J. Variability Among Institutional Review Boards' Decisions Within the Context of a Multi-Center Trial. Critical Care Medicine. 29(2):235-241. 2001. [PubMed]
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Last updated: May 31, 2024