Professional Documents
Culture Documents
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everal years ago, The Hastings Center ran a proj- of individual providers, of failures to respect women’s
ect to understand why fertility patients are more reproductive autonomy: when testing is not offered to
likely than other women in the United States to certain demographics of women, for instance, or when
give birth to twins, triplets, and higher-order multiples the choices of women to terminate or continue pregnan-
and to suggest policies and practices to reduce those high cies are prohibited or otherwise not supported. But this
multiple-birth rates. More than once, those of us run- project also raises puzzles for reproductive autonomy.
ning the project1 were told that clinicians were just do- We have learned that some clinicians and patients do not
ing what women wanted: women sought out treatment discuss the fact that prenatal testing can lead to a deci-
options associated with higher multiple-birth rates, and sion about whether to terminate a pregnancy—they just
they were happy to get pregnant with multiples, espe- don’t talk about it.3 And while the decision whether to
cially twins. Changes to policies and practices risked agree to prenatal screening and diagnostic testing is to
infringing on women’s reproductive autonomy. Yet this be made with women’s free and informed consent, many
explanation is hard to square with the project’s findings. screening tests have been routinized in such a way that
These included the fact that the choices of many U.S. some women do not even recall agreeing to testing, while
fertility patients about which kinds of fertility treatment others feel that agreeing to testing is what their clinicians
to use and how aggressively to use them—whether the expect of them or that the testing is necessary to protect
treatment be ovarian stimulation followed by insemina- themselves and their families from the significant finan-
tion or in vitro fertilization—are heavily constrained by cial hardship of raising a child with a disability.4 In the
financial concerns, such that the patients have signifi- face of these pressures, can one really say that women are
cant incentives to maximize their chances of pregnancy freely choosing to undergo testing or are freely choosing
for each and every insemination or embryo transfer. In to continue or terminate a pregnancy following receipt
addition, fertility treatments are physically and emotion- of test results? The reality of these pressures is requiring
ally arduous, the risks of twin pregnancies and births us to consider expanding the scope of our investigation
are poorly communicated, and the fertility industry is beyond the clinical encounter to the broader context—to
fiercely competitive, with success measured by rates of think harder about what reproductive autonomy means
live births following each treatment cycle. In the face of and how best to enhance it.
these financial and emotional pressures—and in light of
clinics’ incentives to maximize their success rates—what Autonomy in Bioethics
did it mean to say that women “want twins”?2
In a project The Hastings Center is now running on
the future of prenatal testing, we are encountering clear
examples, both in established law and in the practices
F or students of bioethics, the term “autonomy” is most
familiar as one of the key principles of biomedical
ethics, along with justice and beneficence (sometimes
differentiated into beneficence and nonmaleficence). In
bioethics, we generally use the shorthand “autonomy,”
Josephine Johnston and Rachel L. Zacharias, “The Future of Reproductive but when it was initially articulated in the 1978 Belmont
Autonomy,” Just Reproduction: Reimagining Autonomy in Reproductive
Medicine, special report, Hastings Center Report 47, no. 6 (2017): S6-S11. Report on research with human subjects, the full prin-
DOI: 10.1002/hast.789 ciple was labeled “respect for persons.”5 The Belmont
S P E C I A L R E P O R T: J u s t R e p r o d u c t i o n : Re i m a g i n i n g A u t o n o m y i n R e p r o d u c t i v e M e d i c i n e S7
richer and fuller understanding of the good that reproduc- compromised by subsequent judgments and state-based
tive autonomy can bring must also be pursued. This is the laws.
unfinished business of reproductive autonomy.11 In the last two centuries, women in the United States
Before continuing, we must acknowledge that in this experienced government interference not only in the
essay we draw heavily on scholarship about and examples right not to reproduce (a right promoted through access
relevant to women’s reproductive autonomy. We say little to contraception and abortion) but also in the right to re-
about how reproductive autonomy might play out for men produce—specifically as the result of forced sterilization.
or transgender people. While much of what we say applies American states had undertaken concerted programs in
to all people, we agree that more work is necessary to fully forced sterilization as part of the eugenics movement in the
S P E C I A L R E P O R T: J u s t R e p r o d u c t i o n : Re i m a g i n i n g A u t o n o m y i n R e p r o d u c t i v e M e d i c i n e S9
has led to the “reproductive justice” movement. The move- or that fails to support those people and their families, de-
ment includes groups focused on redefining reproductive cisions about testing for or selecting against disability can
rights in ways that center indigenous women, women of be very heavily constrained. Once constraining contextual
color, trans people, and other people marginalized by exist- factors are identified, bioethicists, clinicians, and policy-
ing reproductive choice frameworks. One activist in this makers can begin to address them and work to create the
area, Loretta Ross, the cofounder of the SisterSong Women preconditions for people to be truly able to act in accor-
of Color Reproductive Justice Collective, describes the aims dance with their values and priorities—to attain a repro-
of reproductive justice as fighting for the rights to have a ductive autonomy worth having.
child, not to have a child, to parent the children we have, Seeking a fuller, justice-oriented approach to reproduc-
S P E C I A L R E P O R T: J u s t R e p r o d u c t i o n : Re i m a g i n i n g A u t o n o m y i n R e p r o d u c t i v e M e d i c i n e S11