Autonomy in Tension: Reproduction, Technology, and Justice

Louise P King, Rachel L Zacharias, Josephine Johnston

The Hastings Center Report
The Hastings Center Report

Abstract
Respect for autonomy is a central value in reproductive ethics, but it can be a challenge to fulfill and is sometimes an outright puzzle to understand. If a woman requests the transfer of two, three, or four embryos during fertility treatment, is that request truly autonomous, and do clinicians disrespect her if they question that decision or refuse to carry it out? Add a commitment to justice to the mix, and the challenge can become more complex still. Is it unfair for insurance policies to exclude from coverage the costs of giving fertility to those who lack it or restoring fertility in those who have lost it? What does “just reproduction” look like in the face of multifarious understandings of both justice and autonomy and in light of increasingly complex and costly reproductive technologies? In today’s dialogue about reproduction, medicine, and ethics in the United States, old ethical issues—such as whether women ought to be allowed to access pregnancy termination—are more contested than they have been in decades, while new technologies—like those used to edit the genes of human embryos—suggest that our species could face unprecedented questions about who should exist. As we considered the discussions accompanying these issues and contemplated a special report responding to them, we found ourselves consistently circling back to two ethical commitments: respect for autonomy and the pursuit of justice. As one of the nine essays in this collection asks, why should certain women receive help to establish a pregnancy while others are thrown in jail when they miscarry or their child is stillborn? Respect for autonomy is required where individuals have the ability to make fully informed and voluntary choices. Yet does respecting autonomy require acceding to all the choices of patients or consumers of medical care? We consider these and related questions in this special report from the Hastings Center Report..


King LP, Zacharias RL, Johnston J. Autonomy in Tension: Reproduction, Technology, and Justice. Hastings Cent Rep. 2017 Nov 24;47:S3.

Totipotency: What It Is and What It Is Not

Maureen L. Condic

Stem Cells and Development
Stem Cells and Development

Abstract
There is surprising confusion surrounding the concept of biological totipotency, both within the scientific community and in society at large. Increasingly, ethical objections to scientific research have both practical and political implications. Ethical controversy surrounding an area of research can have a chilling effect on investors and industry, which in turn slows the development of novel medical therapies. In this context, clarifying precisely what is meant by “totipotency” and how it is experimentally determined will both avoid unnecessary controversy and potentially reduce inappropriate barriers to research. Here, the concept of totipotency is discussed, and the confusions surrounding this term in the scientific and nonscientific literature are considered. A new term, “plenipotent,” is proposed to resolve this confusion. The requirement for specific, oocyte-derived cytoplasm as a component of totipotency is outlined. Finally, the implications of twinning for our understanding of totipotency are discussed.

Highlights

  • Inaccurate use of the term “totipotent” by scientists creates unnecessary ethical controversy.
  • Public concern over producing embryos by reprogramming reflects confusion over totipotency.
  • Twinning by blastocyst splitting does not provide scientific evidence for totipotency.

Concid ML. Totipotency: What It Is and What It Is Not. Stem Cells and Development. April 15, 2014, 23(8): 796-812. doi:10.1089/scd.2013.0364.

Beyond abortion: Why the Personhood Movement Implicates Reproductive Choice

Jonathon F Will

American Journal of Law & Medicine
American Journal of Law & Medicine

Abstract
This paper describes the background of the Personhood Movement and its attempt to achieve legal protection of the preborn from the earliest moments of biological development. Following the late 2011 failure of the personhood measure in Mississippi, the language used within the Movement was dramatically changed in an attempt to address some of the concerns raised regarding implications for reproductive choice. Putting abortion to one side, this paper identifies why the personhood framework that is contemplated by the proposed changes does not eliminate the potential for restrictions on contraception and in vitro fertilization (IVF) that put the lives of these newly recognized persons at risk; nor should it if proponents intend to remain consistent with their position. The paper goes on to suggest what those restrictions might look like based on recent efforts being proposed at the state level and frameworks that have already been adopted in other countries.


Will JF. Beyond abortion: Why the Personhood Movement Implicates Reproductive Choice. Am J Law Med. 2013;39(573-616.

Crisis of Conscience: Pharmacist Refusal to Provide Health Care Services on Moral Grounds

Eileen P Kelly, Aimee Dars Ellis, Susan PS Rosenthal

Employee Responsibility and Rights Journal
Employee Responsibility and Rights Journal

Abstract
Advances in technology have resulted in medical procedures and practices that were unthought-of in previous generations. Embryonic stem cell research, abortifacients, birth control, and artificial insemination are just a few examples of these technological advances. While many individuals readily embrace such medical advances, others find them morally objectionable. A contentious national debate is now occurring over whether employee pharmacists have the right to refuse to fill legal prescriptions for emergency contraception because of conscientious objections. In the United States, existing public policy is somewhat muddled in both protecting and encroaching on the employee pharmacist’s right of refusal. This article discusses the legal and ethical nature of that controversy, as well as the clash of interests, rights and responsibilities between employers, employee pharmacists and customers from a U.S. perspective.


Kelly EP, Ellis AD, Rosenthal SP. Crisis of Conscience: Pharmacist Refusal to Provide Health Care Services on Moral Grounds. Employee Responsibilities and Rights J. 2011 May 22;23(1):37-54.

Foreword: The Role of Religion in Health Law and Policy

William J Winslade, Ronald A Carson

Houston Journal of Health Law & Policy
Houston Journal of Health Law & Policy

Extract
This symposium issue explores several continuing controversies at the intersection of Law, Ethics, Healthcare, Politics, Health Policy and Religion: abortion, contraception, the status of embryos, stem cell research, IVF, personal and professional autonomy, end- of-life decisions, and religiously based health care systems. The multiple values associated with each of these topics strain and threaten to usurp the effectiveness of our legal system to regulate them.


Winslade WJ, Carson RA. Foreword: The Role of Religion in Health Law and Policy. Houston Journal of Health Law & Policy. 2006 Sep;6(2):245-248.

(Correspondence) The Celestial Fire of Conscience

Oswaldo Castro, Frederic A Lombardo, Victor R Gordeuk

New England Journal of Medicine, NEJM
New England Journal of Medicine

Extract
Real medical care and services always respect human
life. No one should be forced to collaborate in abortion (even when it is achieved through the prevention of implantation), lethal research on embryos, euthanasia, or assisted suicide.


Castro O, Lombardo FA, Gordeuk VR. (Correspondence) The Celestial Fire of Conscience. N Engl J Med. 2005 Sep 22;353(12):1301.

(Editorial) The sacred and the secular: the life and death of Terri Schiavo

CMAJ

Canadian Medical Association Journal, CMAJ
Canadian Medical Association Journal

Extract
. . . In medical and legal opinion, Terri Schiavo’s cognizance of her self and her life ended in 1990, when she suffered a cardiac arrhythmia and massive cerebral cortical encephalopathy that left her in a persistent vegetative state. Her facial expressions, along with a seemingly “normal” sleep–wake cycle, constituted but one dimension of the cruelty of this condition. . .

. . .More than one commentator has viewed the “right- to-life” fight to prolong Schiavo’s pitiable existence as an anti-abortion campaign “by other means.” . . .

. . . there seems little doubt that, in North America, ideology and religion have begun to seriously distort the type of consensus-building that is the proper business of democratic politics . . .

Where do physicians find themselves in such debates? Medicine is a secular and scientific profession that, for all that, must still contend with the sacred matters of birth, life and death. In practice, physicians must set aside their own beliefs in deference to the moral autonomy of each patient — or else transfer that patient’s care to someone who can meet this secular ethic. . .

. . .The emotionalism and rancour that swirled around the Schiavo case underscores a wider societal duty borne by the medical and scientific community. This is to remain alert to political and legislative tendencies that impose imprecise moral generalizations on the majority, at the expense of reason, scientific understanding and, not infrequently, compassion.


CMAJ. (Editorial) The sacred and the secular: the life and death of Terri Schiavo. Can. Med. Assoc. J.. 2005 Apr 26;172(9):1151.