Law and Science, Perfect Together?

Solving Key Challenges to

Reproductive Health

Prepared for the conference

Reproductive Health in a Pluralist Legal World

Faculty of Law, University of Santiago de Compostela

 30th – 31st March, 2017

 

MS-JD.org Writer in Residence blog “So You want to be An International Lawyer”

Author of the Council of Europe Handbook for the Convention Against Medicrime

Expert on Nanotechnology  and Nanomedicine for the Parliamentary Assembly of the Council of Europe (PACE) ·

Legal Advisor Greek National Platform for Nanomedicine

Presentations at NANOTEXNOLOGY 2012-17 University of Aristotle Thesaloniki Greece and NANOEH 2015 Johannesburg South Africa

Ms.-JD.org SUPERWOMEN JDs Award winner 2016

   Author, GLOBAL HEALTH IMPACTS OF NANOTECHNOLOGY LAW

The sound of freedom that resonates from civil and political rights rings hollow to a newborn who has low birth weight, because the baby’s mother had no access to a clean workplace, good nutrition or adequate prenatal care.  And, what good are political and civil rights to a different baby, whose Mom died in childbirth or who has lost a parent due to an accident, or whose parents are debilitated by occupational disease, or to the baby who may suffer personal injury due to the effects of a parent’s exposure to toxic substances, or whose father has terminal cancer?

The United Nations International Conference on Population and Development in  Cairo  1994 codifies the definition, “Reproductive health is a state of complete physical, mental and social well_being and not merely the absence of disease or infirmity, in all matters relating to the reproductive system and its functions and processes… Reproductive health care is defined as the constellation of methods, techniques and services that contribute to reproductive health and well-being by preventing and solving reproductive health problems…”

Consistent with this legal mandate, in March 2016 the UN Committee on Economic, Social and Cultural Rights (ECSCR) adopted General Comment n. 22 (GC/22) which elaborates upon sexual and reproductive health rights stating “[r]eproductive health …concerns the capability to reproduce and the freedom to make informed, free and responsible decisions. It also includes access to a range of reproductive health information, goods, facilities and services to enable individuals to make informed, free and responsible decisions about their reproductive behavior.” (para. 5 E/C.12/GC/22).

 When we care about reproductive health we are protecting Posterity, thereby extending human rights to lives beyond our own. Universal norms, codified in international instruments, outlast lifetimes and reach across geographic borders and ethnicities and national jurisdictions, to enrich all human society. Pregnancy underscores the complex reality that no one is either: self-sufficient or completely dependent on others. Human existence is a confluence of interdependence, which makes even the highest ranking leader dependent on human rights protection. Civil society has not fully replaced human childbearing for human reproduction, and therefore protecting posterity especially during childbirth and pregnancy is a shared health concern of people throughout the world.

Committee in GC22  further stated that “The right to sexual and reproductive health is also indivisible from and interdependent with other human rights. It is intimately linked to civil and political rights underpinning the physical and mental integrity of individuals and their autonomy, such as the right to life; liberty and security of person”. Several key areas challenge implementation of  these beautiful notions about reproductive health and sexual health, without even touching the questions of who should be parents or whether there is a pluralistic social construct for benchmarking the basic standard of living for a “healthy” child.

            Acccording to  Louis Henkin, in whose memory the Human Rights clinic at Columbia University School of Law was founded “Human rights is the idea of our time. It asserts that every human being, in every society, is entitled to basic autonomy and freedoms and respected and basic needs satisfied.” [1] Without defining autonomy, Henkin further noted that human rights “include freedom from mistreatment and undue governmental intrusion.” This principle applies to ensuring freedom from constraints regarding reproductive health.   Rejecting the notion that there is a trade off between “privacy” and public good” in his seminal article, “Privacy and Autonomy” Henkin[2] views “privacy” as “freedom from governmental intrusion” and “autonomy” as  a zone “of presumptive immunity to governmental regulation”.[3] Henkin’s approach of accepting these rights as a part of, rather than in competition to, societal notions of public good, reflects leading codifications of international human rights. Under the United Nation Charter, [4] the contracting parties state their aspiration to “promote” economic and social advancement and “better standards of life, including the promotion of human rights protections”, in Article 13. [5] Pretty words. What do we do with all this nice talk? The task ahead is to create infrastructure for operationalizing these ideas.

 The mission of this conference is to think carefully and with grandeur about giving these words meaning in daily life.  The charge for this conference is “On the basis of this recent legal authoritative opinion, and in the light of recent developments in many national legal orders, this conference calls upon the academic community to substantively contribute to the enhancement of effective legal solutions to “new” social concerns”.

Our conference goal therefore is to review and revise an existing Declaration with Plan of Action for Reproductive health in order to reflect new knowledge about longstanding health disparities and new science that bring a larger constituency to these issues.  The revised Declaration can focus law and science upon a Plan of Action: to meet the Grand Challenge of eliminating health disparities between men and women that impact reproductive health,  with particular emphasis on reducing maternal mortality and infant mortality, and then report these findings to the ESCR and the 2030 Agenda[6].  Note that although the Declaration from 1998 needs an update, unfortunately, so little has changed in the field regarding unmet needs to protect reproductive health that one can work from this text to craft a strategy that embraces assisted reproductive technologies and the needs of LGBT families, nanotechnologies for preventing cervical cancer and emerging issues in the workforce. The Declaration provides a very useful starting point for a comprehensive reproductive health policy analysis  thereby offering this conference the opportunity to produce a deliverable product

Three key solutions to the major challenges of implementing human rights to sexual and reproductive health are available to promote this effort:  First legal pluralism offers the opportunity to eliminate embedded sexism in the human rights law, which has closeted womens health and reproductive health away from mainstream rights to health. The impact of this inequality presents a second challenge which can be met by good science and sound legal strategy for attacking the problems of reproductive health: empirically documented negative differences in womens health and shockingly high rates of maternal mortality during pregnancy and childbirth, and avoidable infant mortality must be reduced. Inequality embedded under law translates into large health disparities that undermine womens health, especially during pregnancy, in daily life,   as WHO discussed in 2009 « Women and Health: Today’s Evidence , Tomorrow’s Agenda »  d [7]. According to WHO, the difference in male versus female health outcomes using their indicators showed better health among men in 5 stages of the life cycle[8]1. birth to 5 years, 2. adolescence (including implications of adolescent pregnancy) 3. Reproductive years 4. Post-reproductive years (menopause and greater risk for cancer among sex-based target organs) and 5. Advanced ageing (65-80 years).  New technology offers the opportunity to discard skewed methods that have been used in the past,  and thereby reduce health disparaties.

Finally, the third solution to these challenges requires applying good science to achieve realization of human rights to health by creating a clear plan of action, acheivable by revising the 1998 Declaration.

 Legal pluralism offers the first solution to these challenges. By requiring that parallel systems within our own legal system inform our jurisprudence using those legal systems of indigenous peoples, laws of diverse states within a matrix of federalism and of course the needs of diverse groups of people we expand our constituency for implementing human rights to reproductive health.

Legal pluralism also requires concern for equitably including all groups of people within the same system, such as LGBT and infertile populations using assistive reproductive technologies.  The guidepost for these theories is the soft law of the Universal Declaration of Human Rights (UDHR). UDHR Article 25 offers all men the right “to a standard of living adequate for the health and well-being of himself and his family,” (sic) without a benchmark for that standard and without stating whether his family includes single moms. Legal pluralism answers this challenge posed by a tradition that was previously called ‘the rights of man’.   Although the notion of “man” as opposed to the rights of a deity invested in the Divine Right of  Kings seems appropriate at first, Eleanor Roosevelt  promoted the use of the expression “human rights” in the 1940s when she discovered, through her work drafting the UDHR that the rights of men were not understood everywhere to include the rights of women” [9]  In contrast to his rights for his family, international law is rife with references to maternal health or the needs of pregnant women and nursing mothers in a special capacity. UDHR  Article 25.2  states, “Motherhood and childhood are entitled to special care and assistance” but fails to offer special criteria for that care. If new technologies become acceptable rather than experimental, what are the implications for pregnant womens’ right to autonomously choose whether to provide their informed consent for medical care or to accept paying work?

The UN Convention on the Elimination of all forms of discrimination against Women[10], Part III Article 11.(2)a  prohibits “sanctions, dismissal on the grounds of maternity leave”[11] For pregnant women and parents who work, these important issues remain unresolved in the jurisprudence of reproductive health. Article 11(2)  is silent regarding prenatal care and  pregnancy during paid employment, despite stating that pregnant women should enjoy “Special Protections”, a term of art which historically has  included laws that kept women out of the workforce[12].Is there a legal basis for employing special risk assessments or additional preventive strategies to protect fetal health when pregnant women are exposed to workplace hazards that may contribute to adverse pregnancy outcome(s)?  The international law of reproductive health is silent about this question even as increasingly large percentages of the workforce are female.  It is unclear from the text, what is the standard of proof to make a “special protection” necessary or whether an approach to protection can be considered inappropriate even if it protects, for example, the health of the unborn but undermines maternal autonomy during pregnancy.[13]

New mandates ensuring reproductive health however, can use the force of old language mandating separation to solve the need to legitimately link these issues to the larger human rights framework. Frozen eggs and a variety of new forms of surrogacy enable women to continue working in a highpowered career without staring squarely at the face of a biological clock. Into this mix too, jurisprudence must reflect upon the meaning of  GC22 “freedom to make informed, free and responsible decisions”. Access to a range of reproductive health information, goods, facilities and services, as promised in GC22, may mean improving prenatal care, preventing cancer of reproductive organs in men as well as women across all age groups, community support for mothers and fathers, maternity leave with pay and paternity leave, a subject of recent interest in the USA, along with use of information when making autonomous decisions about accepting or refusing treatment. HIV testing, [15]  has taught the importance of moving the modern paradigm away from examining the physical  “invasiveness” of testing, examining instead the emotional burden that testing places upon individuals.  Civil society’s recent experience with HIV policy provides a useful precedent for determining the scope and parameters of emerging informed consent requirements in highly emotional aspects of reproductive health, such as prenatal gene therapy, medically recommended therapeutic abortion, embryo selection in multiple fetus pregnancy, or fetal surgery.

The impact of these embedded sexisms at the root of special protections under law comes to the fore when measuring health disparities. Will  empirically documented, gender-based health disparities between men and women be reproduced, OR  improved, following the widespread use of new technology?

            Second, good science applying new technology may offer solutions to the challenge of  documented health disparities that undermine reproductive health for all. By expanding universally  the  “Capability to reproduce”, new technologies offer a rare opportunity to uproot embedded errors in our methods of creating and administering health care that concretizes or exacerbates health disparities. For example, the European Union  « Birth Day » Project to Reduce Mortality During Pregnancy and Childbirth seeks to apply new technology to address the problem  that  around the world, hundreds of thousands of women and babies die on the day of birth, and millions more are left with serious illness. WHO estimated that 303 000 women died in 2015 from preventable causes related to pregnancy and childbirth. UNICEF reported that  5.9 million children per year die before their 5th birthday, of which 2.65 million are newborn babies. It is widely agreed that many maternal deaths are due to preventable or treatable conditions (WHO). An excellent starting point to focus the best of science and law protecting reproductive health rights  therefore should face the Grand Challenge of : eliminating or reducing health disparities based on gender or sex, and especially those facets of the disparities that impact infant mortality and maternal mortality.[14]

            Turning to the third and final challenge, this conference has the opportunity to update the   DECLARATION_POSITION STATEMENT AND PROPOSED PLAN OF ACTION  ON WORKERS’  REPRODUCTIVE HEALTH PROTECTION (Adopted by the International Conference _ Medical and Ecological Problems of Workers   Reproductive Health, 9_10 December 1998, To insure optimum reproductive health protection worldwide, the Members of the International conference and Informal meeting of experts believe that there is an urgent need for elaboration of international consensus statements as well as the Plan of Action. This plan of action was written more than a decade before WHO documented the health disparities between men and women, and nearly two decades before nanotechnology holds the promise of preventing cervical cancers. Yet the steps forward in this Plan of action remain remarkably practical today.

            Recognizing then- urgent need for improved primary care, protection of mothers, working parents and their children for the benefit of the family and the urgency attached to the problem of understanding the interaction between workplace exposures, environmental factors and preventing worker exposures that jeopardize familial health and human reproductive health, the Committee of  Experts called upon the Director General of WHO to  foster further understanding, research and international co-operation  to prevent and reduce known or expected hazards to reproductive health.  Priorities in research and for primary health care system and occupational safety and health service include: conceptuses lost prematurely, manifested as sub-fecundity and infertility, spontaneous abortion, congenital defects and childhood cancers.

The Declaration called for research regarding:

_ different susceptibility of the female versus the male organism to exposures of chemical and physical agents in the work environment,

_ Whether there should be different standards and limits of exposure to protect the reproductive health of men and women,

_Monitoring possible reduction in human fertility (and sperm quality) and risk factors involved,

_Impact of stress, shift work, work with new technologies on reproductive health,

            The Declaration especially noted that “Particular attention must be paid to the health of working women, a subject that has been neglected in both developed and developing countries”. Such as:

_ Studies in the production sectors which employ predominantly female workers, including both paid and unpaid work in agriculture, domestic labor, garment, textile and food industry, the health care sector, and to consider the double load of women workers who have family.

            Concerning the limits of “Special Protection” under law, the Declaration states, “Selective overprotection of women may compromise employment opportunities of women, condemning them to poverty”

            The Declaration also set forth a strategy for “studying reproductive health at work”

Investigation directed to reveal dose_effect and dose_response relationship for proven and/or suspected reproductive and developmental hazards.

Examination of additional and eventually new endpoints for reproductive toxicity.

Studies on contribution of combined exposures.

Exploration of potential reproductive health hazards of new technologies, for newly introduced occupational chemicals and other agents

Development of study protocols and statistical approach to deal with the problem of small numbers of employees in specific occupational settings and being exposed to specific hazards.

Implementation of models for monitoring reproductive health of workers and subsequent use of these data for epidemiological studies. Further refinement of the protocols with inclusion of individual exposure data

Encouraging reporting

            The Declaration ends by noting “No single comprehensive international instrument about reproductive health in the workplace addresses these issues directly nor does any such instrument adequately ensure access to information and risk communication for all people who confront reproductive health hazards at work”. Unfortunately this statement remains true even though we have expanded the definition and constituency for “reproductive health”.

            Our goal therefore in this conference is to develop a new discourse that will look at all these issues which have been neglected way too long. New developments in assisted reproductive technologies are very useful for expanding the political base with new constituencies who care about reproductive health from the standpoint of childbearing and childrearing. Previously,  the abortion conundrum consumed a disproportionate amount of time and money and emotional energy spent on reproductive health, resources that must be channeled under law to end major health disparities that are inextricably linked to depriving human rights to reproductive health. New technology and new law challenges the traditions of the past, and offers civil society an unprecedented opportunity to protect human rights to reproductive health. Let us accept that challenge. [15]

 Law and Science, Perfect Together to solve these issues of reproductive health?

Thank you for providing me with an avenue for bringing together these strands.

[1]    Louis Henkin, Editor The International Bill of Rights Columbia University Press, 1981. (introduction)

[2]    Lousi Henkin, 74 Columbia Law Review 1410 (1974)

[3]    Henkin “Privacy and Autonomy” 74 Columbia Law Review 1410 (1974) at 1419.

[4]    United Nations Charter, (henceforth UN Charter) Signed 26 June, 1945, Entered into Force 24 October 1945. Center for the Study of Human Rights, Twenty Five Human Rights Documents Columbia University 1994. The Preamble elludes to subsequent economic and social rights protections, by resolving “to promote social progress and better standards of life in larger freedom…. to employ international machinery for the promotion of economic and social advancement of all peoples.”

[5]    UN Charter, Chapter I, Article 13: “1. The General Assembly shall initiate studies and make recommendations for the purpose of: (b) promoting international cooperation in economic, social,… and health fields, and assisting in the realization of human rights and fundamental freedoms for all”.

[6] insertcite BioOpenaccesJournal nanotechnologySept 2016.

 

[7]Ilise Feitshans, Invited Presentation “Beauty, Babies And Dieting: The Impact Of Nanotechnology Law On Reproductive Health  and Women’s Occupational Health Disparities”  IDA background briefing for use by OSTP,  Washington D C December 2013

[8]World Health Organization  (WHO) Women and Health: Today’s Evidence , Tomorrow’s Agenda »  World Health Organization, Geneva Switzerland 2009 ISBN: 9789241563857 : http://whqlibdoc.who.int/publications/2009/9789241563857_eng.pdf

[9]    Maurice Cranston, Daedalus Journal of the American Academy of Arts and Sciences Fall 1983, citing D.D. Raphael, Politcal Theory and The Rights of Man London Macmillan, 1967 p.54.

[10]    Convention on the Elimination of ALl Forms of Discrimination Against Women. Adopted and Opened for Signature, ratification and accession by United Nations General Assembly resolution 34/180 on 18 December 1979. Entered into Force on 3 September 1981 in accordance with Article 27 (1) Reprinted in Center for the Study of Human Rights, Twenty Five Human Rights Documents  supra note ____ at 48-56.N.B.:The potential effects of the terms of this Convention on the abse nce of gender neutral language in UN treaties in general and even in leading human rights documents raises the interesting question whether there the is an identical same legal regime for men and women under international law?

[11]    See: Feitshans, Ilise Levy, “Job Security for Pregnant Employees: The Model Employment Termination Act” 536 Annals of the Amer Academy of Political and Social Sciences 119 (Nov. 1994)

[12]    In the USA, U.S. Supreme Court cases in this area span from a concern for limiting the hours of womens’ work because of their need to be home raising families, upheld in  Muller v. the State of Oregon,  208 U.S. 412 (1908) to the recent decision banning forced sterilizations of women who are exposed to reproductive health hazards in the workplace in IUAW v. Johnson Controls   499 U.S. 187 (1991). See: Feitshans, Ilise Levy, “Job Security for Pregnant Employees”  supra note ___ at 122 “Muller v. Oregon and the Protectionist Era”. See also: Becker, Mary, “Reproductive Hazards After Johnson Controls” 31 Houston Law Rev. 43 (1994).

[13]    See discussion of IUAW v. Johnson Controls and OCAW v. American Cyanamid supra note ___ above. In those cases, women were compelled by their employers to be sterilized in order to obtain or retain employment in an arguably fetotoxic work environment. The Convention on the Elimination of All Forms of Discrimination Against Women remains silent, however, regarding whether its notion of “Special Protections” would be satisfied or limited by the so-called “protections” offered in such extreme cases

[14]ilise Feitshans, “Public Comment On The Draft Strategy 2016 For OSTP and NNI: A New Grand Challenge: The Mom Project Eliminating Or Reducing Womens Health Disparities Impacting Infant Mortality And Maternal Mortality During Pregnancy”,  The Work Health And Survival Project  Haddonfield NJ USA  September 23 2016. Posted on Researchgate October 2016

[15]World Health Organization “World Report on Disability” World Health Organization, Geneva Switzerland 2010.

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