Transcript Making the Future Fair: Theories of Justice for Stem Cell

What Makes Research Fair?
Just Science in an Unjust World
October 2009
Happy Anniversary Ethics Center!
Celebrating 5 Years of Ethics
and Public Involvement
Northwestern University
Center for Bioethics
Science and Society
Laurie Zoloth, Ph.D.
Northwestern University Feinberg School of
Medicine, Center for Bioethics, Science and
Society
Plan of Talk: Basic Research and
Justice
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Not a talk about details of policy
But why we need to think and plan for
justice in basic science
A case to consider
Considering how to decide
A quick comment on unasked questions in
health care reform
Northwestern University Feinberg School of
Medicine, Center for Bioethics, Science and
Society
At NU, we teach and research
questions of ethics and science:
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What does it mean to be human?
What does it mean to be free?
What must I do about the suffering of
others?
How ought I to live decently?
Northwestern University Feinberg School of
Medicine, Center for Bioethics, Science and
Society
Policy asks us to make moral
choices based on these answers
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Morality of our choices are based in core
narratives:
The Good Samaritan
Rules for how to treat/love/care for your
neighbor
All of this helps us reflect on rights and
duties
Northwestern University Feinberg School of
Medicine, Center for Bioethics, Science and
Society
The ethics of basic research
assumes that science:
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Often proceeds as if the only problem is
permission
Often carried on in conditions of relative
abundance
Deals with the problem of description as
the goal
Northwestern University Feinberg School of
Medicine, Center for Bioethics, Science and
Society
The “third”: a problem in
philosophy and policy
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What happens if there are a lot of others?
What if the Good Samaritan had several
wounded travelers by the road? (Churchill, Larry, 996)
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Who is the world made for?
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Northwestern University Feinberg School of
Medicine, Center for Bioethics, Science and
Society
The Question of Justice
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How does a society decide what is just?
In a world of scarcity, how ought a society justly
distribute scarce goods and services?
In light of the particular and poignant crisis of
health care what would be the language of such
choices,--and should scientist have to worry about
this?
How can state can be accountable for justice
How can an international community reflect on
justice?
Northwestern University Feinberg School of
Medicine, Center for Bioethics, Science and
Society
Problems of Justice
in Research
Many difference issues call for
“fairness”.
Who should test our ideas?
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Many career lab rats get the lowdown on
the trade through the website Just Another
Lab Rat (www.jalr.org), created and
maintained by Paul Clough, a professional
volunteer. Clough estimates that there are
about 10,000 volunteers in the US who can
be considered professionals, in that they do
three or four large studies per year and
earn $20,000 or more.
Who should get access to our drugs?
Who can object to our intent?
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Artificial life
Human embryos
Animal research
Dual use technologies
Why justice theory first?
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Why not just let the market or the academic
process decide scientific :
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Goals
Process
Distribution
Northwestern University Feinberg School of
Medicine, Center for Bioethics, Science and
Society
Because planning matters.
Northwestern University Feinberg School of
Medicine, Center for Bioethics, Science and
Society
Life boat #6, as seen from
Carpathian Rescue Ship.
Northwestern University Feinberg School of
Medicine, Center for Bioethics, Science and
Society
Premise One
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Scientific attention to a problem is one of
humanity’s most precious social goods
Northwestern University Feinberg School of
Medicine, Center for Bioethics, Science and
Society
Premise Two
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The funding of science should be a public
good—oversight , transparency, ownership
and sharing are all enhanced by this.
Northwestern University Feinberg School of
Medicine, Center for Bioethics, Science and
Society
Premise Three
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As a social good and not as a commodity,
science is subject to a need for a fair
context in which to proceed.
Both the process and the substance of the
research needs to be fair
BUT! What do we mean by fair? Who
gets into the lifeboat?
Northwestern University Feinberg School of
Medicine, Center for Bioethics, Science and
Society
Standard candidates for material
principles of distribution
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numerical equality
need
individual effort
social contribution
merit or desert
age
Northwestern University Feinberg School of
Medicine, Center for Bioethics, Science and
Society
Theories come from material
principles
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Different theories of justice placed different
emphasis on these material principles,
Can accept combinations of material
principles
Understanding a particular theory of justice
began by critically examining the theoretical
justification of the selection of material
principles
Northwestern University Feinberg School of
Medicine, Center for Bioethics, Science and
Society
And from principles of liberal
democracy—a quick review!
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All liberal theories shared in common the
presuppositions of the liberal tradition,
all rested on the assurance of the primacy of the
individual the individual person, with liberty, rights,
duties, and the ability to engage in voluntary
consent, existed prior to the social contract itself.
the social contract that is entered into by rational
free agents operating from an original position
that was either historical or hypothetical, that
created the liberal state
Northwestern University Feinberg School of
Medicine, Center for Bioethics, Science and
Society
Libertarian theory—why it works!
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liberty, private property, and entitlement.
the problem of ownership
the rights of each individual to own his or her own resources.
According to the classic Lockean theory, the labor power of
the individual, his actual work, was "mixed" with the natural
resources, land, and water to create wealth that the individual
then owned.
The ownership of the harvested crops was brought into being
by virtue of the individual's creation of this commodity where
none existed before.
Northwestern University Feinberg School of
Medicine, Center for Bioethics, Science and
Society
Problems!
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Are free first holdings really free?
What of physical or genetic injustice?
Does the end not really not matter---could
one accumulate nearly all the resources if
done fairly?
Northwestern University Feinberg School of
Medicine, Center for Bioethics, Science and
Society
Utilitarianism—why it works!
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“All action is for the sake of some end, and
rules of action, it seems natural to suppose,
must take their whole character and color
from the end to which they are subservient.
. . . When we are engaged in a pursuit, a
clear and precise conception of what we
are pursuing would seem to be the first
thing we need, instead of the last we are to
look forward to”
 John Stuart Mill
Northwestern University Feinberg School of
Medicine, Center for Bioethics, Science and
Society
Based in Consequences
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Greatest happiness for greatest number
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pleasure and the freedom from pain, are the only
things desirable as ends; and that all desirable
things (which are as numerous in the utilitarian as
in any other schemes) are desirable either for the
pleasure inherent in themselves, or as a means to
the promotion of pleasure and the prevention of
pain.
Northwestern University Feinberg School of
Medicine, Center for Bioethics, Science and
Society
Not rights based
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liberty was not a right unless it was justified
by its utility to a society that was secure.
Claims of merit, claims of prior social
contract, conflicting appeals, and material
principles of justice were ultimately
subjective and hence did not give a
consistent account of justice.
Northwestern University Feinberg School of
Medicine, Center for Bioethics, Science and
Society
Problems!
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Majority v minority
What is good?
Evil
Fate of individual
Northwestern University Feinberg School of
Medicine, Center for Bioethics, Science and
Society
Contract Theory—why it works!
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Contracts can be between states, or people
and God, or citizens and governments, or
between people
Rules and processes are fair, even if
outcome is flawed.
Northwestern University Feinberg School of
Medicine, Center for Bioethics, Science and
Society
Kant—the rules most be
universalizable
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“nothing is left but the conformity of actions
to universal law as such and this alone
must serve the will as its principle. That is
to say, I ought never to act except in such a
way that I can also will that my maxim
should become a universal law.”
Northwestern University Feinberg School of
Medicine, Center for Bioethics, Science and
Society
Rawls: Social Contract Theory
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Based on equality of shares as in John Rawls
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“Each person possesses an inviolability founded
on justice that even the welfare of society as a
whole cannot override.
justice denies that the loss of freedom for some is
made right by a greater good shared by others.
Therefore in a just society the liberties of equal
citizenship are taken as settled; the rights secured
by justice are not subject to political bargaining or
to the calculus of social interests.”
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Northwestern University Feinberg School of
Medicine, Center for Bioethics, Science and
Society
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First Principle: Each person is to have an
equal right to the most extensive total
system of equal basic liberties compatible
with a similar system of liberty for all
Northwestern University Feinberg School of
Medicine, Center for Bioethics, Science and
Society
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Second Principle: social and economic
inequalities are to be arranged so that they
are both:
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a. to the greatest benefit of the least advantaged,
b. attached to positions open to all under
conditions of fair equality of opportunity
And you should not know your position
Northwestern University Feinberg School of
Medicine, Center for Bioethics, Science and
Society
Problems!
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Rawls was the author of affirmative action
and the Great Society
Are there limits on how the long
adjustments are needed?
You are not really behind a “veil of
ignorance.”
What if the contract creates new injustices?
Northwestern University Feinberg School of
Medicine, Center for Bioethics, Science and
Society
Egalitarian Theories of Justice-why
it works!
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each of us had inescapable and essential rights and
obligations toward one another that could not be ignored
rights, obligations, duties, and needs arose from
something we shared as persons,
common to all
must be respected by all.
commitment to equality
Akin to faith idea of being God’s children
ability to make rational choices that honored this
equality were at the heart of this theory of justice.
Northwestern University Feinberg School of
Medicine, Center for Bioethics, Science and
Society
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First among these duties was the notion
that justice was rooted in equality, an
equality due on the basis
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of shared human embodiment and
participation in a mutually consensual human
society.
Northwestern University Feinberg School of
Medicine, Center for Bioethics, Science and
Society
A basic decent minimum.
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This basic decent minimum was an
assessment of a quantifiable human
necessity
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constituted the share to which all persons were
entitled by virtue of their personhood alone
not because of merit or desert.
Northwestern University Feinberg School of
Medicine, Center for Bioethics, Science and
Society
All these theories share these qualities:
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Must be applicable: Any theory, to be
ultimately credible, must address certain
social imperatives: cultural norms,
economic limits, and the power of the state.
Rooted in mortality and rooted in scarcity
Theory for rational beings
Northwestern University Feinberg School of
Medicine, Center for Bioethics, Science and
Society
All faced challenges in the late 20th
century
Feminist in North America
 Liberation Theology in Latin America
 Post- Modernist in Europe
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increased scarcity and financial
catastrophe.
 But were the basis for many health care
policies
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Northwestern University Feinberg School of
Medicine, Center for Bioethics, Science and
Society
Science proceeds largely with a
libertarian argument:
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3 Classic lifeboat problems in all
technological advances
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First use will be risky and dangerous
Will quickly be available to a small elite
Will move from desire to need to entitlement
Northwestern University Feinberg School of
Medicine, Center for Bioethics, Science and
Society
American policy is organic as
opposed to systematic
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Driven by new technology and innovation
Driven by marketplace
Driven by demographic changes/food/
transportation policy
Driven by history of triage in war and by
history of labor relations.
Northwestern University Feinberg School of
Medicine, Center for Bioethics, Science and
Society
Life expectancy was limited in
1965
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Most Americans were insured, then retired
and died two years later, at around 67
But beta blockers, stents, cancer
therapies, and lipid blockers changed that.
ICUs transplants and new small molecules
drugs help too
Combination of expensive high tech and
epiphanies about health extend expectation
Northwestern University Feinberg School of
Medicine, Center for Bioethics, Science and
Society
Unions were stronger, and most
American workers had coverage
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But many forces coalesced to change this
too:
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Off shore production closed plants and industries
Rise of large employers who did not insure
workers
Rise in immigration
Full time, able bodied, and young workers also
were uninsured
Poor health creates “syndrome X”
Northwestern University Feinberg School of
Medicine, Center for Bioethics, Science and
Society
World War II also drove health
care
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Wages were frozen, but labor was scarce:
How to keep workers at Kaiser? GM?
Answer—pay a portion of pay raises as
untaxed benefits
Kaiser had company doctorsHMO
Others paid for insurance instead of wages
Co-payment later introduced as health care
cost rose
Northwestern University Feinberg School of
Medicine, Center for Bioethics, Science and
Society
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Or, you can fund low cost cardiac treatment
centers in poor neighborhoods, with the
goal of preventing obesity, stopping
smoking.
Or you could fund research to create a prenatal genetic test for this and see if there is
a genetic pattern for cardiac disease and…
Northwestern University Feinberg School of
Medicine, Center for Bioethics, Science and
Society
Controversial slide alert:
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What theory of justice do you want?
Are we discussing the right question?
Northwestern University Feinberg School of
Medicine, Center for Bioethics, Science and
Society
We said yes to 4 things
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1. To a health care marketplace: big science,
litigation and technology create medicine as a profit
center.
2. To abundant food, sweets, drinks, smoking and
lack of exercise as a lifestyle for many.
3. To paying for many untested and competing
choices of therapy without a system of justice
4. To a rising sense of entitlement, a search for
youth , to avoiding a serious discussion of death,
and the limits of medicine.
Northwestern University Feinberg School of
Medicine, Center for Bioethics, Science and
Society
Are these ethical?
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Could any be changed?
Does saying “yes” to universal access
mean saying “no” to any of these things?
Is it fair to fund research on disease
essential triggered by our culture?
How should we understand a rise in
diseases of the 18th and 19th century?
Northwestern University Feinberg School of
Medicine, Center for Bioethics, Science and
Society
Statement of Problem
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How can we set in place a fair and just
system of access to the good ends of
scientific research?
Using a fair and just process..
And aiming for fair and just goals for
humanity?
Northwestern University Feinberg School of
Medicine, Center for Bioethics, Science and
Society
When we live in an unjust world?
Northwestern University Feinberg School of
Medicine, Center for Bioethics, Science and
Society
Some choices seem fairly easy
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Setting up a system would include
vaccinations, well-baby check up, annual
physicals, mammograms, and pap smears.
But what about new technology?
How is new science incorporated into what
we understand as basic?
What if it is more expensive, but better?
Northwestern University Feinberg School of
Medicine, Center for Bioethics, Science and
Society
You decide!
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There is an high tech intervention (10K)
that can prevent fatal heart attacks. But it
is not certain who should get this. Setting
up a trial to be certain will be expensive,
and you would have to get volunteers to be
randomized into a control group. Should
you pay for this? Should you just give it to
everyone?
Northwestern University Feinberg School of
Medicine, Center for Bioethics, Science and
Society
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Or should you fund a genetic testing
program for all 18 year olds to see if they
are at risk for sudden cardiac death?
Northwestern University Feinberg School of
Medicine, Center for Bioethics, Science and
Society
You decide! Controversial
Research
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Should research on extending life
expectancy proceed?
Should artificial life forms be created? For
what purpose? And under whose control?
Northwestern University Feinberg School of
Medicine, Center for Bioethics, Science and
Society
Justice is the challenge for the next
5 years
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Your participation in ethics discourse is not
just about prohibition and enthusiasm.
It is responsible for answering the final
question: what must I do in response to the
suffering of the other?
Northwestern University Feinberg School of
Medicine, Center for Bioethics, Science and
Society
Thank you!
Northwestern University Feinberg School of
Medicine, Center for Bioethics, Science and
Society
The Center for Bioethics, Science
and Society