Families Matter: Ethically, Legally, and Clinically
Program
We often talk, in bioethics, about individual autonomy. Yet our most challenging ethical, legal and clinical controversies in health care often center around family roles and responsibilities: How should we handle parents’ refusals of medically recommended treatment or, conversely, parents’ requests to medicate or surgically alter their children? What should be known, and by whom, about a child’s genome, especially when genetic information effects other family members? What weight should be given to family interests in decisions about a child’s health care? How should we think about 3-parent embryos? Gamete donors? Gestational mothers? What rights and responsibilities should fathers have with regard to decisions about abortion and adoption, for example, as well as health care decisions for their offspring? Health care decisions might be messier, but maybe they would also be better if we gave more attention to family matters, and how families matter.
This multidisciplinary program was developed to inform and deliberate with ethicists, health care providers, attorneys and the public about changes in conceptions of the family and medical technologies and practices that challenge moral conventions and contemporary law. Faculty experts and participants engaged in thoughtful discussion regarding a broad range of ethical and legal issues that arise from new ways of creating and new ways of understanding families and providing health care for expectant parents, growing fetuses, infants, children, adolescents….and their families.
Target Audience
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Ethics committee leaders and members, ethics consultants and bioethicists;
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Pediatricians, obstetricians, gynecologists, neonatologists, fetal surgeons, maternal fetal specialists, and other physicians;
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Nurses and nurse practitioners working in family health care, pediatric and related health care specialties;
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Health lawyers, hospital legal counsel, risk managers, and attorneys working in public policy positions related to health care of children and families;
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Chaplains, psychologists, social workers, therapists and members of the public interested in ethical and legal issues in family health care.
Objectives
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Explored changes and challenges in social concepts of “family” and the impact these have on health-related ethical decisions and legal parameters;
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Discussed conflicts of interests and rights of parents, fetuses, children, and adolescents;
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Applied ethical and legal frameworks for addressing controversies in the medical care of parents and children;
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Evaluated the implications for children and families of current and future applications of genetic/genomic information, vaccine policy, medically suppressing puberty, and other ethical and legal controversies in obstetric, pediatric, and family health care.
Agenda
Wednesday, March 18
12:00 - 1:00pm, Registration
1:00 - 1:10pm, Welcome and Introduction
1:10 - 2:30pm, Changes and Challenges in the Concept of Family
2:30 - 4:15, Clinical, Ethical, and Legal Aspects of Innovative Reproduction
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Louise King, MD, JD - Artificial Reproductive Technologies - A Medical Overview
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Kara Swanson, JD, PhD - Posthumous Parenthood
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Vardit Ravitsky, PhD - The Three-Parent Embryo
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Elizabeth Reis, PhD - Reproductive Tourism
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Moderator: Robert Truog, MD
4:15 - 5:00, Reception and Open Forum
5:00 - 6:30, Open Forum: Family Planning: The Economics, Ethics, and Government Regulation of Family Planning
Panel Talkback:
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Moderator: Holly Fernandez Lynch, JD, MBioethics
Thursday, March 19
All panels and sessions will include time for Q & A.
8:00 - 8:30, Breakfast
A continental breakfast will be provided.
8:30 - 10:30am, Children's Health - Whose Responsibility?
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Michele Goodwin, JD - Drugs and Substance Use during Pregnancy
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Claire McCarthy, MD - Immunization Policy
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Maryanne Lewis, MS, PPCNP - Pediatric Obesity
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Areej Hassan, MD, MPH - Adolescent Contraception and Abortion
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Moderator: Holly Fernandez Lynch, JD, MBioethics
10:30 - 10:45am, Break
10:45am - 12:15pm, Whole Genome Sequencing of Fetuses and Newborns
Panel Talkback:
12:15 - 12:30pm, Break to Pick Up Lunch
A bagged lunch will be provided.
12:30 - 1:15pm, Small Luncheon Group Case Discussions
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Request for posthumous sperm retrieval.
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Medically delaying puberty of pre-teen with gender dysphoria and intellectual disability.
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Parental request or refusal of treatment for handicapped newborns.
1:15 - 1:30pm, Break
1:30 - 3:00pm, Balancing Children's Interests, Parental Preferences, and Medical Recommendations
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Vicki Forman, RN, MFA - Family Decisions - Parents of Preemie Twins
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Sadath Sayeed, MD, JD - Best Interests of Children and Families
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Moderator: Christine Mitchell, RN
3:00 - 3:15pm, Break
3:15 - 4:15pm, Concurrent Sessions
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Abortion Politics and Prenatal Genetic Testing - Jaime Staples King, JD, PhD
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Difficult Prenatal Conversations (PERCS video) - Stephen Brown, MD and Sheleagh Somers, MSW
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Knowing Where You Come From (debate) - I. Glenn Cohen, JD and Vardit Ravitsky, PhD
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Fetal Pain - Amanda Pustilnik, JD
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The Market for Creating Families - Michele Goodwin, JD
4:15 - 4:30pm, Break
4:30 - 5:30pm, Concurrent Sessions (Continued)
5:30 - 6:30pm, Networking Reception
Friday, March 20
All panels and sessions will include time for Q & A.
8:00 - 8:30am, Breakfast
A continental breakfast will be provided.
8:30 - 11:00am, The Role of Families in Health Care
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Moderator: Robert Truog, MD - Opening Remarks
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Rebecca Brendel, MD, JD - Legal and ethical Aspects of Behavior Contracts in Pediatric Settings
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Judith Johnson, JD - Medical and Surgical Interventions in Children with Disabilities
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Norman Spack, MD - Delaying Puberty and Treating Disorders of Sexual Differentiation
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Christine Mitchell, RN - Unilateral Pediatric Do No Resuscitate Orders
11:00 - 11:15am, Break
11:15am - 12:15pm, Concurrent Sessions
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Caring for Children with Trisomy 21 - Brian Skotko, MD
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Involving Families in Consent to Research - Holly Fernandez Lynch, JD, MBioethics
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The Ethical Status and Legal Standing of Fathers - I. Glenn Cohen, JD
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Transplant Decisions re: Children with Disabilities - Daniel Kamin, MD and Carol Powers, JD
12:15 - 1:30pm, Lunch
1:30 - 2:30pm, Concurrent Sessions (continued)
2:30 - 2:45pm, Break
2:45 - 3:40pm, Shared Decision-Making - Rhetoric or Reality?
3:40 - 4:00pm, Closing Remarks
Cosponsored by the Center for Bioethics at Harvard Medical School and the Petrie-Flom Center for Health Law Policy, Biotechnology, and Bioethics at Harvard Law School, with support from the Oswald DeN. Cammann Fund.
Tags
bioethics biotechnology children's health health law policy personhood reproductive rights reproductive technologies