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What Makes Research Fair? Just Science in an Unjust World

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What Makes Research Fair? Just Science in an Unjust World October 2009 Happy Anniversary Ethics Center! Celebrating 5 Years of Ethics and Public Involvement – PowerPoint PPT presentation

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Title: What Makes Research Fair? Just Science in an Unjust World


1
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.
2
Plan of Talk Basic Research and Justice
  • 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

3
At NU, we teach and research questions of ethics
and science
  • 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?

4
Policy asks us to make moral choices based on
these answers
  • 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

5
The ethics of basic research assumes that science
  • 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

6
The third a problem in philosophy and policy
  • What happens if there are a lot of others?
  • What if the Good Samaritan had several wounded
    travelers by the road? (Churchill, Larry, 996)
  • Who is the world made for?

7
The Question of Justice
  • 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?

8
Problems of Justice in Research
  • Many difference issues call for fairness.

9
Who should test our ideas?
  • 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.

10
Who should get access to our drugs?
11
(No Transcript)
12
Who can object to our intent?
  • Artificial life
  • Human embryos
  • Animal research
  • Dual use technologies

13
Why justice theory first?
  • Why not just let the market or the academic
    process decide scientific
  • Goals
  • Process
  • Distribution

14
Because planning matters.
15
Life boat 6, as seen from Carpathian Rescue
Ship.
16
Premise One
  • Scientific attention to a problem is one of
    humanitys most precious social goods

17
Premise Two
  • The funding of science should be a public
    goodoversight , transparency, ownership and
    sharing are all enhanced by this.

18
Premise Three
  • 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?

19
Standard candidates for material principles of
distribution
  • numerical equality
  • need
  • individual effort
  • social contribution
  • merit or desert
  • age

20
Theories come from material principles
  • 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

21
And from principles of liberal democracya quick
review!
  • 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

22
Libertarian theorywhy it works!
  • 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.

23
Problems!
  • 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?

24
Utilitarianismwhy it works!
  • 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

25
Based in Consequences
  • Greatest happiness for greatest number
  • 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.

26
Not rights based
  • 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.

27
Problems!
  • Majority v minority
  • What is good?
  • Evil
  • Fate of individual

28
Contract Theorywhy it works!
  • 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.

29
Kantthe rules most be universalizable
  • 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.

30
Rawls Social Contract Theory
  • Based on equality of shares as in John Rawls
  • 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.

31
  • 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

32
  • Second Principle social and economic
    inequalities are to be arranged so that they are
    both
  • 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

33
Problems!
  • 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?

34
Egalitarian Theories of Justice-why it works!
  • 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 Gods children
  • ability to make rational choices that honored
    this equality were at the heart of this theory of
    justice.

35
  • First among these duties was the notion that
    justice was rooted in equality, an equality due
    on the basis
  • of shared human embodiment and
  • participation in a mutually consensual human
    society.

36
A basic decent minimum.
  • This basic decent minimum was an assessment of a
    quantifiable human necessity
  • constituted the share to which all persons were
    entitled by virtue of their personhood alone
  • not because of merit or desert.

37
All these theories share these qualities
  • 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

38
All faced challenges in the late 20th century
  • Feminist in North America
  • Liberation Theology in Latin America
  • Post- Modernist in Europe
  • And in the 21st centurythe challenge of
    increased scarcity and financial catastrophe.
  • But were the basis for many health care policies

39
Science proceeds largely with a libertarian
argument
  • 3 Classic lifeboat problems in all technological
    advances
  • First use will be risky and dangerous
  • Will quickly be available to a small elite
  • Will move from desire to need to entitlement

40
American policy is organic as opposed to
systematic
  • 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.

41
Life expectancy was limited in 1965
  • 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

42
Unions were stronger, and most American workers
had coverage
  • But many forces coalesced to change this too
  • 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

43
World War II also drove health care
  • Wages were frozen, but labor was scarce How to
    keep workers at Kaiser? GM?
  • Answerpay 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

44
  • 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 pre-natal
    genetic test for this and see if there is a
    genetic pattern for cardiac disease and

45
Controversial slide alert
  • What theory of justice do you want?
  • Are we discussing the right question?

46
We said yes to 4 things
  • 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.

47
Are these ethical?
  • 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?

48
Statement of Problem
  • 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?

49
When we live in an unjust world?
50
Some choices seem fairly easy
  • 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?

51
You decide!
  • 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?

52
  • Or should you fund a genetic testing program for
    all 18 year olds to see if they are at risk for
    sudden cardiac death?

53
You decide! Controversial Research
  • Should research on extending life expectancy
    proceed?
  • Should artificial life forms be created? For
    what purpose? And under whose control?

54
Justice is the challenge for the next 5 years
  • 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?

55
Thank you!
56
The Center for Bioethics, Science and Society
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