1. Daniel Sperling, SJD, BA(Philosophy) Federmann School of Public Policy and Braun School of Public Health The Hebrew University of Jerusalem dsperling@mscc.huji.ac.il

2. Introduction ART help people who for medical or social reason cannot conceive/carry a fetus Social background of regulation and provision of services is not fully explored Conflict with principles of formal justice and equality to ART are not fully discussed

3. A Few Questions: What is the relationship between these principles and the legal, ethical or professional duty to provide ART? Do and should the principles of formal justice and equality fully apply to issues regarding the use of ART? Do ART create or guarantee equality in the society or do they make the social gaps deeper, thereby increasing inequality in the society? (Crossley, 2005; Elster, 2005; Pennings, 2001; Lowry, 2004)

4. Possible Application of the PJ&E 1) Equality in access to ART: Should ART be equally allocated to whoever is in their need? eg discrimination on the basis of sexual orientation or age; obesity; BMI; lifestyle (smoking; alcohol) 2) Equality in outcomes of ART: Should “outcomes” obtained as a result of ART be equally distributed? eg allocation of frozen embryos (Sheldon, 2004); PGD and disability (Asch, 2002-3)

5. Empirical Evidence In contrast to rich theoretical debate (Apel, 2007; Inhorn & Fakih, 2006; Riley, 2007; Elster, 2005; Crossley, 2005) there are very few studies Most of the studies focus on IVF in the US Studies reveal a tendency to turn away candidates for IVF and ART on a somewhat arbitrary basis (Gurmankin et al., 2005; Sperling & Simon, 2010)

6. Empirical Evidence Every fertility clinic has its own screening protocols or uses the common sense of providers Information sought from candidates varies extensively Different weight to various factors concerning the candidate’s personal characteristics

7. Ethical Implications A few ways to think of these issues: 1) As a matter of right 2) As a matter of justice and rationing 3) As a matter of personal autonomy 4) In light of the ethical principle of truth telling

8. A Matter of Justice and Rationing Can we justify inequalities in access to IVF treatment? Two major problems: 1) Need => illness approach; capacity to benefit 2) Justification for allocation is associated with the concept of health The preferred analysis: an examination of theories of justice

9. A Matter of Justice and Rationing Most theories of justice would find it difficult to support an argument for equal access Five alternatives: 1) Libertarianism 2) Utilitarianism 3) Communitarainism 4) Daniels’ theory of normal opportunity range 5) Veatch’s Egalitarianism

10. A Matter of Justice and Rationing 1) Libertarianism- a. The purpose of justice is to protect individual liberties b. Welfare rights undermine social cohesion, democratic governance and individual freedom c. Inequalities in access to IVF may be unfortunate, but not unfair, unless perhaps an act of discrimination is responsible for the inequalities d. Priority setting should be a matter of individual choice and determined by the free market

11. A Matter of Justice and Rationing 2) Utilitarianism- a. Standard of justice depends on the principle of utility b. The way benefits and burdens are distributed independently of aggregate welfare is irrelevant to Utilitarianism [care for the aged?/disabled?] c. Preference-Satisfaction (becoming a parent) counts as utility

12. A Matter of Justice and Rationing Utilitarianism – d. Problems with cost benefit analysis: Is coming into existence considered a health gain? Should a life year for a potential creature be evaluated as much as for an existing creature? Can we estimate the exact costs associated with the social factors affecting future health expenditures of raising these children? Large expected expenditures for society

13. A Matter of Justice and Rationing 3) Communitarianism- a.principles of justice are pluralistic and derive from various conceptions of the good; Emphasis on the responsibility of society to the individual or the responsibility of individual to society b. The idea of free and rational choice is false; the right is not prior to the good c. The community/society as a whole should decide how resources are allocated

14. A Matter of Justice and Rationing Communitarianism- d. How to elicit community preferences ? e. To bring a child who will need tremendous support from society may be an irresponsible act f.On the other hand, providing equal access to reproductive technologies is vital to ensure the adequate functioning of society as a whole g.Community traditions and practices should determine our commitment to equal access to infertility treatment (Walzer, 1983)

15. A Matter of Justice and Rationing 4) Daniels’ theory of normal opportunity range a. Allocation to ensure that everyone can attain the normal opportunity range: “array of life-plans reasonable to pursue within given conditions” b.Health needs are broader than the need for health care=> socially controllable actions that affect population health and its distribution

16. A Matter of Justice and Rationing Daniels’ theory of normal opportunity range Problems: 1) Is infertility a disease? Does infertility treatment restore normal functioning or cure disease conditions curtailing normal opportunity range or affecting population health and distribution? 2) For whose perspective the array of life plans should be reasonable to pursue? 3) (Reproductive) normal opportunity range depends on the advancement of such technologies, social views and public funding

17. A Matter of Justice and Rationing 5) Veatch’s Egalitarianism a.Three premises: -Human beings are of equal worth -Natural resources have more implications -Prima facie responsibility toward a more equal society b. Objective net welfare over a lifetime for each individual c.A right to the health care necessary "to provide an opportunity for a level of health equal as far as possible to the health of other people“

18. A Matter of Justice and Rationing Veatch’s Egalitarianism: d.Resting on the notions of health and disease e.Being a parent may be considered part of one's net welfare f.However, being fertile may not necessarily contribute to one’ level of health equal to the level health of other people g.Choice and fault (homosexuality; socio-economic background; narcotic addiction) h.Allow people to waive their right to reproduce (autonomy/justice) i.Equal net welfare measured by consumption?

19. The main argument Our intuition that something is wrong in rejecting candidates for IVF on arbitrary basis can hardly be explained by ethical principles and theories An appeal to Martha Nussbaum’s capabilities approach (Nussbaum, 2000) The role of justice is to give people an equal or at least a sufficient share of capabilities, namely those things a person can do (Sen) or are most important for people for what they are (Nussbaum)

20. Nussbaum’s capabilities approach Health is one of the most important conditions of human life and a significant constituent of human capabilities Ten basic and universal human capabilities: 1) life 2) bodily health 3) bodily integrity 4) senses, imagination and thought 5) emotions 6) practical reason 7) affiliation 8) other species 9) play 10) Control over one's environment Every person should be assured – and has the right to demand- the development of an adequate or sufficient set of these basic capabilities

21. Nussbaum’s capabilities approach Certain functions are particularly central in human life The goal: make society pursue basic state of affairs in which persons are treated as each worthy of regard and are put in a position to live really humanly

22. The main argument Access to fertility treatment and assisted reproduction may be justified by reference to six such basic capabilities (2 mostly important) Nussbaum herself uses reproduction as an example of a "central human capability“

23. Support for access to reproduction 1) Bodily health- - specifically mentioned under bodily health - a broad definition of reproductive health that includes, among other "having safe sex life and…the capability to reproduce and the freedom to decide if, when and how often to do so." 2) Bodily Integrity- to also include one's having opportunities for sexual satisfaction and for choice in matters of reproduction

24. Support for access to reproduction 3) Emotions- reproduction allows one to be able to have attachments to people outside oneself and to form human associations that are crucial for one's development. 4) Practical Reason- reproductive choices, especially the decision of whether to have children, with whom and under what circumstances, are central for "being able to form a conception of the good and to engage in critical reflection about the planning of one's life".

25. Support for access to reproduction 5) Affiliation -having children and making children with one's beloved enables one to "live with and toward others, to recognize and show concern for other human beings, engage in various forms of social interactions; imagine the situation of another and have compassion for that situation”. -protections against discrimination on the basis of race, sex, sexual orientation etc. 6) Play – it is with children and through child rearing that one is able to laugh, play and enjoy recreational activities.

26. Advantages of the theory Avoids the need to classify reproductive technologies under concepts of medicine/health Provides a more elaborate understanding of what the “primary goods”, to also include social basis for "natural goods" Does not push citizens into functioning in a single determinate manner, especially in the area of reproduction

27. Conclusions Equal access to fertility treatment and reproductive technologies may be justified by an appeal to Nussbaum’s capabilities approach Questions like whether IVF should be equally accessed and on what grounds will continue to occupy us in theory and practice Addressing these issues may contribute to our understanding of fundamental problems in medical ethics and bioethics

28. THANK YOU!!!