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Contents - JLME - 2015 Volume 43: 2
Full Journal
  1. Full Journal Download
Table of Contents
  1. Table of Contents
Letter From The Editor
  1. Letter From The Editor
Introduction
  1. Introduction
Symposium Articles
  1. The Bad Mother: Stigma, Abortion and Surrogacy
  2. Legal Change and Stigma in Surrogacy and Abortion
  3. Selective Reduction: "A Soft Cover for Hard Choices" or Another Name for Abortion?
  4. When Is an Abortion Not an Abortion?
  5. Selection against Disability: Abortion, ART, and Access
  6. Normalizing Disability in Families
  7. Non-Invasive Testing, Non-Invasive Counseling
  8. Reproductive Information and Reproductive Decision-Making
  9. Disclosure Two Ways
  10. Distinctions in Disclosure: Mandated Informed Consent in Abortion and ART
  11. Eggs and Abortion: "Women-Protective" Language Used by Opponents in Legislative Debates over Reproductive Health
  12. False Framings: The Co-opting of Sex-Selection by the Anti- Abortion Movement
  13. The Triple System for Regulating Women's Reproduction
  14. The Invisible Classes in High Stakes Reproduction
  15. Conceiving of Products and the Products of Conception: Reflections on Commodification, Consumption, ART, and Abortion
  16. Complexifying Commodification, Consumption, ART, and Abortion
  17. The Doctor's Dilemma: Paternalisms in the Medicolegal History of Assisted Reproduction and Abortion
  18. How to Escape the Doctor's Dilemma? De-Medicalize Reproductive Technologies
  19. Expectant Fathers, Abortion, and Embryos
  20. Respecting Intent and Dispelling Stereotypes by Reducing Unintended Pregnancya
  21. The State's Interest in Potential Life
  22. Membership Has Its Privileges? Life, Personhood, and Potential in Discussions About Reproductive Choice
Independent Articles
  1. What Will It take to Address the Global Threat of Antibiotic Resistance?
  2. Organ Donation, Brain Death and the Family: Valid Informed Consent
  3. Institutional Oversight of Faculty- Industry Consulting Relationships in U.S. Medical Schools: A Delphi Study
  4. Stakeholders' Views of Alternatives to Prospective Informed Consent for Minimal-Risk Pragmatic Comparative Effectiveness Trials
  5. Conflicts of Interest and Effective Oversight of Assisted Reproduction Using Donated Oocytes
Columns
  1. Currents In Contemporary Bioethics Ethical Issues in Big Data Health Research
Full Journal
Full Journal Download
ASLME - [PDF]


Table of Contents
Table of Contents
Letter From the Editor
Letter From The Editor
ASLME - [PDF]

This issue of the Journal of Law, Medicine & Ethics is an exciting one for the editorial staff. Most importantly, it contains an outstanding symposium, "Intersections in Reproduction: Perspectives on Abortion and Assisted Reproductive Technologies." This symposium collects an impressive group of authors who have carefully considered how abortion and reproductive technology affect autonomy, informed consent, healthcare access, stigma, legislation, and more. The issue also gives space to other thinkers to respond, question, and expand on these views. Originally conceived as a two-day workshop at Yale Law School, this collection was developed into the symposium in front of you by guest editors Judith Daar and Kimberly Mutcherson. Daar and Mutcherson not only provide a wide array of viewpoints and responses, but together they have assembled the most definitive and exhaustive examination of issues surrounding abortion and reproductive technologies to date.
Introductions
Introduction
Judith Daar and Kimberly Mutcherson - [PDF]

"Abortion and reproductive technologies have historically occupied separate realms in law, policy, and academia. In spite of some obvious and natural overlap, scholarship exploring the relationship between abortion and assisted reproduction is sparse." With these two sentences, we initiated a project to explore intersections in assisted reproductive technologies (ART) and abortion that now fill the pages of this bountiful special issue. Having been given the chance to co-guest edit an issue, we enthusiastically embraced the opportunity, pledging to make a valuable contribution to the scholarship of procreation by soliciting writings in the underpopulated, underanalyzed, and undertheorized landscape that links reproduction-aiding and reproduction-avoiding medical technologies.
Symposium Articles
The Bad Mother: Stigma, Abortion and Surrogacy
Paula Abrams - [PDF]

Surrogacy and abortion represent two facets of procreative liberty, the right to reproduce and the right to avoid reproducing. Research on stigma associated with abortion and surrogacy illuminates how these very different experiences carry similar stigmatic harm. Why do certain decisions about reproduction engender social support, other decisions social disapproval? Restrictions on surrogacy and abortion derive from a common legal paradigm - state regulation on the pregnant body - that is rooted in traditional gender roles. Not all laws restricting abortion and surrogacy evince gender stereotyping. Abortion and surrogacy pose complex moral and social dilemmas. But research of stigma associated with abortion and surrogacy suggests that gender stereotypes play a role in the creation of stigma.
Legal Change and Stigma in Surrogacy and Abortion
John A. Robertson - [PDF]

The role of stigma in limiting reproductive rights has long hovered in the air. Paula Abrams has sorted through the concept and shown how it operates in two major areas of procreative liberty - having a child through surrogacy and avoiding childbirth by abortion. Her paper is especially useful for showing how legal change initially dilutes stigma but may reinstall it with post-legalization regulation.
Selective Reduction: "A Soft Cover for Hard Choices" or Another Name for Abortion?
Radhika Rao - [PDF]

Selective reduction, also known as multifetal pregnancy reduction (MFPR), is the practice of terminating one or more fetuses to reduce a multiple pregnancy, e.g., from quadruplets to twins or a singleton. Selective reduction and abortion both involve the destruction of fetal life, but they are classified by different designations to underscore the notion that they are regarded as fundamentally different medical procedures: the two are performed using distinct techniques by different types of physicians, upon women under very different circumstances, in order to further dramatically different objectives. For these reasons, the two procedures appear to call for a distinct moral calculus, and they have traditionally evoked contradictory reactions from society - sympathetic responses towards selective reduction, which is perceived as a difficult but "responsible" choice vs. stigmatizing or even punitive approaches towards abortion, which is deemed an immoral action.
When Is an Abortion Not an Abortion?
Kimberly Mutcherson - [PDF]

In her article, "Selective Reduction: 'A Soft Cover for Hard Choices' or Another Name for Abortion?," Radhika Rao explores the dense thicket of contradictions and conflicts related to abortion and selective reduction. Selective reduction is one name for a procedure performed to terminate one or more fetuses in a multi-fetal pregnancy in order to increase the chances that the other fetuses and the pregnant woman will emerge from the pregnancy healthy. Though Rao, in keeping with some authorities, uses the terminology selective reduction in her piece, others prefer the term multi- fetal pregnancy reduction (MFPR) as more reflective of the procedure's goals and practice. Competing monikers for the same procedure speaks to the importance of naming when discussing the termination of fetal life. It is also a sign of the array of legal, ethical, and medical conundrums surrounding practices that end or alter the course of a pregnancy.
Selection against Disability: Abortion, ART, and Access
Alicia Ouellette - [PDF]

A decade ago, Adrienne Asch asked: "Is it possible for the same society to espouse the goals of including people with disabilities as fully equal and participating members and simultaneously promoting the use of embryo selection and selective abortion to prevent the births of those who would live with disabilities?" She concluded that informed reproductive choice, including the use of pre-implantation genetic screening and selective abortion, could potentially coexist with respect for current and future people with disabilities, but that achieving such a balance would require substantial clinical and cultural changes in light of the social context in which decisions about disability-based selection are made.
Normalizing Disability in Families
Mary Crossley - [PDF]

In "Selection against Disability: Abortion, ART, and Access," Alicia Ouellette probes a particularly vexing point of intersection between ART and abortion: how negative assumptions about the capacities of disabled persons and the value of life with disability infect both prospective parents' prenatal decisions about what pregnancies to pursue and fertility doctors' decisions about providing services to disabled adults. This commentary first briefly describes what I view as Ouellette's key points and her article's most valuable contributions. It then suggests further expanding the frame of reference for Ouellette's discussion. Viewing decisions about who can reproduce and what children will be born as fundamentally decisions about family suggests ways of drawing on intersectional approaches and growing public acceptance of nontraditional families to promote acceptance of people with disabilities as valued family members - without limiting reproductive liberties.
Non-Invasive Testing, Non-Invasive Counseling
Rachel Rebouche - [PDF]

A regulatory moment for prenatal health care is here. An increasing amount of legislative attention has concentrated on the decisions pregnant women make after prenatal testing. The impetus for this legislation is a new non-invasive prenatal genetic test (NIPT). From the beginning of pregnancy, cell-free fetal DNA travels across the placental lining into the mother's bloodstream, increasing in quantity as the pregnancy progresses. Laboratories can now analyze that DNA for chromosomal abnormalities and for fetal sex at 10 weeks of gestation. NIPT, which relies on a sample of the pregnant woman's blood, is painless, occurs early in pregnancy, and is available for clinical and commercial use. In 2013, major health insurance plans began to cover NIPT for certain populations of women, such as women over 35 years old. And private companies have started marketing prenatal testing kits directly to consumers, who return a blood sample from the prospective mother to a company laboratory.
Reproductive Information and Reproductive Decision-Making
Maxwell J. Mehlman - [PDF]

The abortion controversy has dominated the conversation about the relationship between reproductive information and reproductive decision-making, as Rachel Rebouche aptly demonstrates in her article in this collection entitled "Non-Invasive Testing, Non-Invasive Counseling." Professor Rebouche focuses on the newest reproductive information technology, non-invasive prenatal testing (NIPT). She describes legislative efforts to restrict both the information that can be obtained from NIPT and the actions that can be taken as a result of that information: Tennessee's prohibition of government-sponsored NIPT for incurable conditions; Arizona's and Oklahoma's extension of immunity to physicians who decline to disclose fetal anomalies; Virginia and Nebraska permitting genetic counselors to omit discussing abortion as an option; North Dakota's ban on abortions for fetal anomalies detected through prenatal testing; requirements that physicians record their patients' reasons for seeking abortions; prohibitions in nine states on abortions based on the gender of the fetus; as well as a federal bill, the Prenatal Non-Discrimination Act (PRENDA), that would make it illegal to abort a fetus on account of its sex or race.
Disclosure Two Ways
Erin B. Bernstein - [PDF]

In the past two decades, courts and scholars have grappled with the appropriateness of pre-abortion disclosures mandated by the state. Statutes requiring physicians to recite a specific script, often detailing potential psychological "risks" of choosing to terminate a pregnancy, have proliferated nationwide over the past decade. Opponents of such laws have sometimes characterized the requirement of a procedurespecific disclosure as unnecessary and unique to the abortion context. In recent years, however, state legislatures supportive of abortion rights have legislated procedure-specific mandatory disclosures in the context of assisted reproduction and other health care procedures with reproductive health impacts.
Distinctions in Disclosure: Mandated Informed Consent in Abortion and ART
Judith Daar - [PDF]

Transparency and disclosure in the health care realm occupy a vital link between the delivery of medical services and patient autonomy. In her article, "Disclosure Two Ways," Erin Bernstein skillfully explores this link in the context of abortion and assisted conception services, keenly observing the rise in mandatory disclosure laws in both arenas. Her thesis, as I understand it, is that laws that require enhanced disclosure above traditional informed consent thresholds can be understood as neutral tools in the name of patient protection, even - or perhaps especially - when their effect is to persuade a patient to forego the requested treatment. She combats the critique that pre-abortion required disclosures are sui generis, arguing against their uniqueness by analyzing them alongside a swell of mandated disclosure laws in the assisted reproductive technologies (ART) context.
Eggs and Abortion: "Women-Protective" Language Used by Opponents in Legislative Debates over Reproductive Health
Sujatha Jesudason and Tracy Weitz - [PDF]

The language of "protection" has been a dominate frame in the political discourse of the contemporary women's movement, especially as it relates to reproductive health. Since the 1960s, and coming of age in the Women's Health Movement, activists and advocates have fought for the protection of women's rights and health, and against gender-based discrimination and restrictions to reproductive health services, such as abortion and contraception. In the case of women's reproductive rights, the use of the "protective" frame has been a resonant and effective mobilizing discourse for quite a while. This paper investigates the use of this frame, by ideological opponents, during a recent California legislative session.
False Framings: The Co-opting of Sex-Selection by the Anti- Abortion Movement
Seema Mohapatra - [PDF]

Sujatha Jesudason and Tracy Weitz provide an empirical examination of the framing of public discourses related to assisted reproductive technology (ART) and abortion by examining two bills considered by the California legislature in "Eggs and Abortion: The Language of Protection in Legislation Regulating Abortion and Egg Donation in Debate over Two California Laws." Jesudason and Weitz analyze the framing of two different legislative efforts: one allowing non-physician practitioners to perform non-surgical abortions and the other removing the prohibition on egg donor payment in the research setting. Jesudason and Weitz identified three different memes that were present in the discussion of these two bills: health care providers and scientists as inherently suspect, denial of women of agency through speaking about them as passive actors that things happen to, and the focus on potential harms and the need to protect women from harm. What was most compelling about their article is that they convincingly show how these themes were used as political tools by both anti-choice and pro-choice groups in California. Jesudason and Weitz note that "frames and language matter."
The Triple System for Regulating Women's Reproduction
June Carbone and Naomi Cahn - [PDF]

Analysis of ART and abortion must include the experiences of women at the emerging center of American life, as well as those at the top and bottom of the socioeconomic scale. Our contribution explores the triple system of fertility regulation, analyzing the intersections between fertility and class and using the experiences of women in the middle to add depth to our understanding of women's exercises of autonomy.
The Invisible Classes in High Stakes Reproduction
Michele Goodwin - [PDF]

This essay argues that what separates poor mothers from their middle class counterparts are many factors - not simply couples' ability to plan, the power of their choices, and agency. For example, power, social clout, and access to health care (and health information) influence status and parenting. Historically, for white women choice has been about abortion; for many women of color, choice is about being able to be a mother. This essay begs the question whether real parallels can be drawn on questions of contraception, abortion, and ART simply by examining class and to what extent race and sexual orientation matter in research on parenting.
Conceiving of Products and the Products of Conception: Reflections on Commodification, Consumption, ART, and Abortion
Jody Lynee Madeira - [PDF]

Assisted reproductive technologies and abortion prompt serious questions about how we should understand the complex relationship between money, markets, choice, and the care relationship. This essay defines "patient" and "consumer," and then describes how they are less important than their attributes. Then it describes theories of commodification and consumption in reproductive contexts and their consequences, from compliance and coercion to resistance and creativity. It also examines whether ART and abortion are "markets." Finally, this essay explores how the attributes which comprise the patient/consumer roles can be incorporated into health care reform, and the implications of health care reform models on ART and abortion.
Complexifying Commodification, Consumption, ART, and Abortion
I. Glenn Cohen - [PDF]

This commentary on Madeira's paper complicates the relationships between commodification, consumption, abortion, and assisted reproductive technologies (ARTs) she draws in two ways. First, I examine under what conditions the commodification of ARTs, gametes, and surrogacy lead to patients becoming consumers. Second, I show that there are some stark difference between applying commodification critiques to ART versus abortion.
The Doctor's Dilemma: Paternalisms in the Medicolegal History of Assisted Reproduction and Abortion
Kara W. Swanson - [PDF]

This article analyzes the comparative history of the law and practice of abortion and assisted reproduction in the United States to consider the interplay between medical paternalism and legal paternalism. It supplements existing critiques of paternalism as harmful to women's equality with the medical perspective, as revealed through the writings of Alan F. Guttmacher, to consider when legal regulation might be warranted.
How to Escape the Doctor's Dilemma? De-Medicalize Reproductive Technologies
Paul A. Lombardo - [PDF]

Kara Swanson details the professional evolution of Alan Guttmacher, and the quandary he faced when the law interfered with prerogatives he wished to exercise in his practice of reproductive medicine. This response focuses on how decoupling reproductive technologies from a regime requiring medical licensure could lead to more complete reproductive autonomy for women.
Expectant Fathers, Abortion, and Embryos
Dara E. Purvis - [PDF]

One thread of abortion criticism, arguing that gender equality requires that men be allowed to terminate legal parental status and obligations, has reinforced the stereotype of men as uninterested in fatherhood. As courts facing disputes over stored pre-embryos weigh the equities of allowing implantation of the pre-embryos, this same gender stereotype has been increasingly incorporated into a legal balancing test, leading to troubling implications for ART and family law.
Respecting Intent and Dispelling Stereotypes by Reducing Unintended Pregnancya
Dawn Johnsen - [PDF]

In "Expectant Fathers, Abortion, and Embryos," Dara Purvis evaluates the concepts of intent and gender stereotypes in connection with "expectational fathers" in the related contexts of abortion and assisted reproductive technologies. This comment seeks to build upon Purvis's own analysis to obviate her concern that abortion discourse promotes harmful stereotypes of men as disinterested fathers. To the contrary, for men - no less than for women - a desire to avoid or terminate pregnancy is fully consistent with loving and shared parenthood of existing or future children. The same individuals who choose to become parents at other times in their long reproductive lives will use contraception and have abortions. In fact, most women who have abortions already have children. Policies that empower men and women to avoid unintended pregnancy are the sensible, win-win, front-line approach to avoid disputes over abortion.
The State's Interest in Potential Life
Dov Fox - [PDF]

Courts have resolved a range of controversies by casual appeal to the state's interest in "potential life" that Roe held capable of overriding even fundamental rights. My analysis of this potential-life interest reveals its use to mean not one but four species of concern. I call these prenatal welfare, postnatal welfare, social values, and social effects and demonstrate how they operate under different conditions and with varying levels of strength.
Membership Has Its Privileges? Life, Personhood, and Potential in Discussions About Reproductive Choice
Jonathan F. Will - [PDF]

As Professor Dov Fox points out in his essay, reference to "potential life" in American abortion jurisprudence is both indeterminate and underspecified. This commentary highlights that use of the phrase "potential life" by courts also obscures the fact that a position has been taken that biological life is not the equivalent of legal personhood. Worse, the position has been imposed on those who do not share it without offering reasons to justify its imposition in terms that those who oppose it can reasonably be expected to endorse.
Independent Articles
What Will It take to Address the Global Threat of Antibiotic Resistance?
Steven J. Hoffman and Kevin Outterson - [PDF]

In March 2015, the Dag Hammarskjold Foundation convened a workshop in Uppsala, Sweden to address questions about antibiotic resistance, in partnership with the Global Strategy Lab, the Journal of Law, Medicine & Ethics (JLME), the Norwegian Institute of Public Health, and ReAct - Action on Antibiotic Resistance. Eleven concise articles were commissioned to explore whether ABR depended on global collective action, and if so, what tools could help states and non-state actors to achieve it. This article introduces that collection, which is found in an online-only symposium at aslme.org.
Organ Donation, Brain Death and the Family: Valid Informed Consent
Ana S. Iltis - [PDF]

I argue that valid informed consent is ethically required for organ donation from individuals declared dead using neurological criteria. Current policies in the U.S. do not require this and, not surprisingly, current practices inhibit the possibility of informed consent. Relevant information is withheld, opportunities to ensure understanding and appreciation are extremely limited, and the ability to make and communicate a free and voluntary decision is hindered by incomplete disclosure and other practices. Current practices should be revised to facilitate valid informed consent for organ donation.
Institutional Oversight of Faculty- Industry Consulting Relationships in U.S. Medical Schools: A Delphi Study
Stephanie R. Morain, Steven Joffe, Eric G. Campbell, and Michelle M. Mello - [PDF]

The conflicts of interest that may arise in relationships between academic researchers and industry continue to prompt controversy. The bulk of attention has focused on financial aspects of these relationships, but conflicts may also arise in the legal obligations that faculty acquire through consulting contracts. However, oversight of faculty members' consulting agreements is far less vigorous than for financial conflicts, creating the potential for faculty to knowingly or unwittingly contract away important rights and freedoms. Increased regulation could prevent this, but it is unclear what forms of oversight universities view as feasible and effective. In this article, we report on a Delphi study to evaluate several approaches for oversight of consulting agreements by medical schools. The panel was comprised of 11 senior administrators with responsibility for oversight of faculty consulting relationships. We found broad agreement among panelists regarding the importance of institutional oversight to protect universities' interests. There was strong support for two specific approaches: providing educational resources to faculty and submitting consulting agreements for institutional review. Notwithstanding the complexities of asserting authority to regulate private consulting agreements between faculty members and companies, medical school administrators reached consensus that several approaches to improving institutional oversight are feasible and useful.
Stakeholders' Views of Alternatives to Prospective Informed Consent for Minimal-Risk Pragmatic Comparative Effectiveness Trials
Danielle Whicher, Nancy Kass, and Ruth Faden - [PDF]

As interest in comparative effectiveness research grows, questions have emerged regarding whether it is ever acceptable to alter informed consent requirements for research when patients are randomly assigned to widely-used therapies. This paper reports on interviews with Institutional Review Board members and researchers and on focus groups with patients from Geisinger and Johns Hopkins health systems. The objective was to elicit participants' views of the acceptability of four different disclosure and authorization models for low-risk pragmatic comparative effectiveness trials of widely-used therapies. Results suggest that although participants valued autonomous choice, many also believed that it was acceptable to streamline information disclosure and to use an opt-out process for eligible individuals who would prefer not to participate. This provides some preliminary evidence that relevant stakeholders find alternatives to traditional informed consent acceptable for low-risk pragmatic comparative effectiveness trials of widely-used therapies as long as a sufficient amount of choice is preserved.
Conflicts of Interest and Effective Oversight of Assisted Reproduction Using Donated Oocytes
Valarie K. Blake, Michelle L. McGowan, and Aaron D. Levine - [PDF]

Oocyte donation raises conflicts of interest and commitment for physicians but little attention has been paid to how to reduce these conflicts in practice. Yet the growing popularity of assisted reproduction has increased the stakes of maintaining an adequate oocyte supply and (where appropriate) minimizing conflicts. A growing body of professional guidelines, legal challenges to professional self-regulation, and empirical research on the practice of oocyte donation all call for renewed attention to the issue. As empirical findings better inform existing conflicts and their potential harms, we can better attempt to reduce these conflicts. To that end, the article first describes the nature of conflicts in oocyte donation and relevant regulations and professional guidelines. We then describe studies on conflicts at four phases of oocyte donation: recruitment, screening, stimulation, and post-stimulation monitoring. Next we consider three models for conflict reduction in medicine generally: improved professional self-regulation, outright restriction like Stark anti-referral laws, or the use of conflict mediators, like in living organ donation. We ultimately conclude that improved professional self-regulation is a reasonable starting place for oocyte donation.
Columns
Currents In Contemporary Bioethics Ethical Issues in Big Data Health Research
Mark A. Rothstein - [PDF]

Let me say at the outset that I am not an expert on Big Data. I am not even an expert on Little Data. I am, like many of you, someone who teaches and writes about research ethics, including privacy, autonomy, and informed consent. I am someone who is concerned whenever I hear that a new research method is so exciting and so promising that we ought to set aside the ethical principles and rules that have shaped the world of research ethics since the Nuremberg Code in 1947. I am reminded of the statement of J. Robert Oppenheimer, theoretical physicist and father of the atom bomb: "When you see something that is technically sweet, you go ahead and do it and you argue about what to do about it only after you have had your technical success." I hope we do not fall into the trap of believing that any new information technology is worth using in health research regardless of the ethical issues in performing the research or the larger implications.