The Good Birth Project
For decades people have considered with seriousness the notion of a ‘good death’ but few have similarly addressed the other bookend of life, asked what it is that might constitute a ‘good birth.’ My research team and I conducted in-depth interviews with more than 100 mothers who gave birth in a breadth of settings via a variety of modes, asked them to reflect on their births, what made them good, bad, meaningful. Our results so far are published in the journal Social Science and Medicine and in my forthcoming book, A Good Birth.
The Second Wave Initiative
When illness strikes during pregnancy, women and their doctors often must make treatment decisions without evidence, because pregnant women are usually excluded from needed research. In 2008, Ruth Faden, Maggie Little and I co-founded the Second Wave Initiative, aimed at advancing responsible and ethically appropriate inclusion of pregnant women in research. We’ve hosted an expert Workshop at Georgetown; published papers in the Hastings Center Report, the International Journal of Feminist Approaches to Bioethics, the American Journal of Public Health and others; have made progress with policymakers in Washington; and have just been awarded a major grant from the National Institutes of Health for the PHASES study to examine the ethics of HIV research and pregnancy, and a major grant from the Wellcome Trust to address the ethics of research with pregnant women in the context of Zika and other public health emergencies. See the websites: www.hivpregnancyethics.org and www.zikapregnancyethics.org
Reproductive Ethics in the Genomic Era
With advancing science in genomics, it is getting easier to get information about fetuses – and lots of it, sometimes through a simple blood draw during pregnancy. How should we think about this testing? Who should have access and when? What should we be worrying about? I am a member of a research group, founded by Miriam Kuppermann and Mary Norton, of national leaders in genetics, decision science, and ethics working to address these questions and others. I am also an investigator on an NIH grant to study the role of intellectual property disputes in access to these new technologies.
Experiences around reproduction can be powerful, traumatic – and long-lasting. Through the lenses of fertility treatment, miscarriage and birth I have explored how women and men think about the remains of reproductive events – both material and experiential. I completed a large study on how women and men think about embryos remaining after fertility treatment – in part an attempt to pull the dialogue about embryos away from the so-called “experts” (scientists, politicians, religious authorities) and capture the views of those most intimately connected with the embryos themselves. I’ve extended this inquiry to understand how women think about what remains for them after a perinatal loss or miscarriage.
Krubiner CB, Faden RR, Cadigan RJ, Gilbert SZ, Henry LM, Little MO, Mastroianni AC, Namey EE, Sullivan KA, Lyerly AD. Advancing HIV research with pregnant women: navigating challenges and opportunities. AIDS. 2016. 30(15): 2261-5.
Janvier A, Lantos J and the POST Investigators, Ethics and etiquette in neonatal intensive care. JAMA Pediatrics. 2014;168(9):857-8.
Carranza L, Lyerly AD, Lipira L, Prouty CD, Loren D, Gallagher TH. Delivering the truth: challenges and opportunities for error disclosure in obstetrics. Obstetrics and Gynecology 2014;123(3):656-9.
Shields K and Lyerly AD. Exclusion of Pregnant Women from Industry-Sponsored Clinical Trials. Obstetrics and Gynecology 2013;122(5):1077-81.
Lyerly AD and Faden RR. Mothers Matter: Ethics and Research During Pregnancy. JAMA Virtual Mentor 2013; 15(9):775-8.
McCall C, Grimes D, Lyerly AD. "Therapeutic" Bed Rest in Pregnancy: Unethical and Unsupported by Data. Obstetrics and Gynecology 2013;121(6):1305-8.
Little M, Lyerly AD. The Limits of Conscientious Refusal: A Duty to Ensure Access. JAMA Virtual Mentor 2013;15:257-62.
Lyerly AD, Namey EE, Gray B, Swamy G, Faden R. Women’s Views about Participating in Research While Pregnant. IRB 2012 Jul-Aug;34(4):1-8.
Lyerly AD. Ethics and Normal Birth. Birth 2012, 39(4):315-17.
Simkin P, Stewart M, Shearer B, Christopher Glantz J, Rooks JP, Lyerly AD, Chalmers B, Keirse MJ. The Language of Birth. Birth 2012; 39(2): 156-64.
Lyerly AD. Issues in Reproduction. In: Hester M. and Schonfeld TL (editors) Guidance for Healthcare Ethics Committees 2012, Cambridge UK: Cambridge University Press, pp. 98-105.
Harris LH, Cooper A, Ransinski KA, Curlin FA, Lyerly AD. Obstetrician-gynecologists’ objections to and willingness to help patients obtain an abortion. Obstetrics and Gynecology 2011, 118(6):905-12.
Lyerly AD, Little M, Faden R. Reframing the Framework: Toward Responsible Inclusion of Pregnant Women as Participants in Research. American Journal of Bioethics 2011, 11(5):50-1.
Little M., Lyerly AD, Faden R. Moving Forward with Research Involving Pregnant Women: A Critical Role for Wisdom from the Field. American Journal of Bioethics – Primary Research 2011, 2(1): 15-17.
Wilkinson JP, Lyerly AD, Hayat SK, Prabhu M. Ethical Dilemmas in Women’s Health in Under-Resourced Settings. International Journal of Gynecology and Obstetrics 2011, April;113(1):25-7.
Lyerly AD, Nakagawa S, Kuppermann M. Decisional Conflict and the Disposition of Cryopreserved Embryos: Implications for Informed Consent. Human Reproduction 2011, 26(3):646-54.
Lyerly AD. Ethics in Academic Medicine. In: Rayburn WF and Schulkin J (editors) The Changing Landscape of Academic Obstetrics and Gynecology 2011, New York: Springer, 147-61.
Namey E, Lyerly AD. The Meaning of ‘Control’ for Childbearing Women in the US. Social Science and Medicine 2010; 71(4):769-76.
Minkoff H, Lyerly AD. Samantha Burton and The Rights of Pregnant Women Twenty Years After in Re AC. Hastings Center Report 2010, 40(6):13-5.
Lyerly AD, Little M. Toward an Ethical Approach to Vaginal Birth After Cesarean. Seminars in Perinatology 2010; 34(5):337-44.
Lyerly AD, Marking the Fine Line: Ethics and the Regulation of Innovative Technologies in Reproductive Medicine. Minnesota Journal of Law, Science and Technology (Rising Stars Issue) 2010;11(2):685-712.
Lyerly AD, Steinhauser K, Voils C, Namey E, Alexander C, Bankowski B, Cook-Deegan R, Dodson W, Jungheim E, Gates E, McGovern W, Myers ER, Osborn B, Schlaff W, Sugarman J, Tulsky J, Walmer D, Faden RR, Wallach E. Fertility Patients’ Preferences for Frozen Embryo Disposition: Results of a Multi-Institutional U.S. Survey, Fertility and Sterility 2010; 93(2):499-509.
Little M, Lyerly AD, Faden R. Pregnant Women and Medical Research: A Moral Imperative. Bioethica Forum 2009;2:60-5.
Lyerly AD. “Test Tube Families: Why the Fertility Market Needs Regulation” by Naomi Cahn (book review). New England Journal of Medicine 2009; 361(4):429-430.
Lyerly AD, Mitchell LM, Armstrong EM, Harris LH, Kukla R, Kuppermann M, Little M. Risk and the Pregnant Body. Hastings Center Report 2009; 39(6): 34-42.
Lyerly AD, Little M, Faden R. The National Children’s Study: A Golden Opportunity to Advance the Health of Pregnant Women, American Journal of Public Health. 2009; 99:1742-5.
Minkoff H, Lyerly AD. ‘Doctor, What Would You Do?’ Obstetrics and Gynecology 2009 113(5):1137-9.
The Obstetrics and Gynecology Risk Research Group: Kukla R, Kuppermann M, Little M, Lyerly AD, Mitchell LM, Armstrong EM, Harris LH. Finding Autonomy in Birth. Bioethics, 2009; 23(1):1-8.
Roelands J, Jamison MG, Lyerly AD, James A. Consequences of Smoking During Pregnancy on Maternal Health. Journal of Women’s Health 2009; 18(6):867-872.
Lyerly AD, Little MO, Faden RR. Pregnancy and Clinical Research. Hastings Center Report 2008;38(6):53.
Brown S, Lyerly AD, Little M, Lantos J. Pediatrics-Based Fetal Medicine: Unanswered Ethical Questions. Acta Pediatrica 2008; 97(12):1617-19.
Little M, Lyerly AD, Mitchell LM, Armstrong E, Harris L, Kukla R, Kuppermann M. Mode of Delivery: Toward Responsible Inclusion of Patient Preferences. Obstetrics and Gynecology 2008;112(4):913-8.
Lyerly AD, Little M, Faden R. The Second Wave: Toward Responsible Inclusion of Pregnant Women in Research. International Journal of Feminist Approaches to Bioethics, 2008; 1(2):5-22.
Lyerly, AD, Little MO, Faden RR. A Critique of the ‘Fetus as Patient.’ American Journal of Bioethics 2008; 8:42-44.
Lyerly AD. Reframing Neutral Counseling. Virtual Mentor: American Medical Association Journal of Ethics 2008;10(10) 635-639.
Lyerly AD, Faden RR. Embryonic Stem Cells: Willingness to Donate Frozen Embryos for Stem Cell Research. Science 2007; Jul 6;317:46-7.
Lyerly AD, Mitchell LM, Kukla R, Kuppermann M, Armstrong B, Harris L, Little M. Risks, Values and Decision Making Surrounding Pregnancy, Obstetrics and Gynecology 2007;109(4):979-84.
Lyerly AD. Shame, Gender and Birth. Hypatia. Winter 2006; 21(1):101-18.
Lyerly AD, Steinhauser K, Namey E, Tulsky JA, Cook-Deegan R, Sugarman J, Walmer D, Faden RR, Wallach E. Factors that Affect Infertility Patients’ Decisions about Disposition of Frozen Embryos. Fertility and Sterility 2006; 85(6):1623-30.
Sugarman JS, Lyerly AD, Kurtzberg J. Untying the Gordian Knot: Policies, Practices, and Ethical Issues Related to Banking of Umbilical Cord Blood. Journal of Clinical Investigation 2005;115(10):2592-7.
Bankowski B, Lyerly AD, Faden RR, Wallach E. The Social Implications of Embryo Cryopreservation. Fertility and Sterility 2005; 84(4):823-32.
Lyerly AD, Rothman BK. Paternalism or Misuse of Power? Virtual Mentor: American Medical Association Journal of Ethics 2004 6(2).
Lyerly AD, Schwartz, P. Is the patient always right? Hastings Center Report. March/April 2004; 34(2): 13-14.
Lyerly AD, Faden RR. HIV and Assisted Reproductive Technology: Women and Healthcare Policy. American Journal of Bioethics 2003;3(1):41-3.
Lyerly AD, Mahowald MB. Maternal-Fetal Surgery for Myelomeningocele. Clinics in Perinatology 2003;30:155-65.
Lyerly AD, Cefalo RC, Socol M, Fogarty L, Sugarman J. Attitudes of Maternal-Fetal Specialists Concerning Maternal-Fetal Surgery. American Journal of Obstetrics and Gynecology 2001, 185:1052-8.
Lyerly AD, Myers ER, Faden RR. The Ethics of Aggregation and the Case of Hormone Replacement Therapy. Health Care Analysis 2001, 9(2):187-211.
Lyerly AD, Gates E, Cefalo RC, Sugarman J. Toward the Ethical Evaluation and Use of Maternal-Fetal Surgery. Obstetrics and Gynecology 2001, 98:689-97.
Lyerly AD, Mahowald M. Maternal-Fetal Surgery: The Fallacy of Abstraction and the Problem of Equipoise. Health Care Analysis 2001, 9(2):151-165.
Lyerly AD, Anderson J. Human Immunodeficiency Virus and Assisted Reproduction: Reconsidering Evidence, Reframing Ethics. Fertility and Sterility 2001;75:843-58.