Daniel Sperling - Erasmus Observatory on Health Law

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Transcript Daniel Sperling - Erasmus Observatory on Health Law

Daniel Sperling, SJD, BA(Philosophy)
Federmann School of Public Policy and
Braun School of Public Health
The Hebrew University of Jerusalem
[email protected]
 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
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)
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
eg allocation of frozen embryos (Sheldon, 2004);
PGD and disability (Asch, 2002-3)
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)
Empirical Evidence
 Every fertility clinic has its own screening
protocols or uses the common sense of providers
 Information sought from candidates varies
 Different weight to various factors concerning the
candidate’s personal characteristics
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
A Matter of Justice and Rationing
 Can we justify inequalities in access to IVF
 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
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
A Matter of Justice and Rationing
1) Libertarianisma. The purpose of justice is to protect individual
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
A Matter of Justice and Rationing
2) Utilitarianism-
a. Standard of justice depends on the principle of
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
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
A Matter of Justice and Rationing
3) Communitarianisma. 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
A Matter of Justice and Rationing
Communitarianismd. 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)
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
A Matter of Justice and Rationing
 Daniels’ theory of normal opportunity range
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
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
b. Objective net welfare over a lifetime for each
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“
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
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
i. Equal net welfare measured by consumption?
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’s capabilities approach
 Health is one of the most important conditions of
human life and a significant constituent of human
 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
Nussbaum’s capabilities approach
 Certain functions are particularly central in human
 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
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“
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
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
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".
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.
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
 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