Ethical Issues in Health Research in Developing Countries

Rio de Janeiro

November 19, 2009

Daniel Wikler, Ph.D.Harvard School of Public Health

The Global Burden of Disease: Ethical Dimensions

First International Conference on Burden of Disease Studies in Brazil

Outline

1. Defining “ethics”

2. Putting ethics into the DALY

3. What does the DALY measure?– Health vs The Goodness of Health

4. Sources of Values

5. Some ethical controversies

“Ethical Dimensions”

GBD is a measure. Kilograms and mmHg are measures, too, but they don’t have ‘ethical dimensions’. Why is GBD different?– GBD is based on science, and is accountable to

standards of scientific integrity. But it is a practical tool, designed to achieve desirable goals.

– GBD incorporates ethical values – as Murray made very clear in “Rethinking DALYs”

– Ethics guides the uses of GBD

Ethics vs Strategy

Let’s distinguish: Science (epidemiology, etc.) Strategy (how to construct GBD so as to

achieve maximum policy impact, etc.) Ethics (identifying ethical choices in GBD

methodology; debating these choices)

→This talk is only about ethics.

Ethics Within GBD vsEthical Issues in the Use of GBD

The DALY explicitly incorporates ethical values– Though these have changed over time– Justifications for certain features of DALYs were

based on ethical considerations

Using DALYs in priority-setting is guided (consciously or not) by ethical values

Ethics and Maximization: I

Early assumption: build the values into the DALY. Then we do not need further ethical judgment in using DALYs. We just follow the simple rule: “Avert as many DALYs as possible.”

Ethics and Maximization II

Classical utilitarianism is a maximizing theory:

“The greatest good for the greatest number”– “Good” is utility (happiness, or preference

satisfaction)

Criticism of utilitarianism often focuses on this maximizing.– Example: Egalitarians favor equal distribution of

benefits, even if this does not maximize

Ethics and Maximization III

Can the DALY (or any measure) incorporate egalitarian and other desirable values, so that the use of the measure could be guided by maximization – and still serve egalitarian goals?– This seems to have been the intent with the original

DALY

Ethics and Maximization IV

But trying to incorporate all the values that should guide the allocation of resources into the DALY measure faces objections:1. Not all the values that should guide the activities that

use DALYs can be anticipated in the construction of the DALY

2. Maximization can still be challenged on ethical grounds in some cases

3. With the ethics built in, The DALY looks less like a measure of health.

Ethics and Maximization V

– If we retreat from the goal of maximization, the distributional elements do not need to be built into the DALY.

– They can be employed by the decision-maker who is informed of the consequence, in terms of a less morally-charged DALY measure, for population health

– E.g. A planner might sacrifice some DALY aversion in order to avoid discrimination

What Does the DALY measure?

Health? Utility? The Value (Goodness) of Health?

– Are there multiple dimensions of the value of health? E.g.

Preference satisfaction / utility Opportunity Freedom

“Is Healthier Than…” vs “Is Better than…”

Are Health And Wellbeing Separable? I

John Broome: – Who is healthier? A blind person or a deaf person?– If this is a question about “goodness” we cannot

answer it without knowing a lot about the person’s overall wellbeing (e.g. possessions)

If one has books and the other has CDs, it matters a lot whether the blind person has CDs rather than books

– Thus the goodness of health is not separable from other aspects of wellbeing.

Are Health And Wellbeing Separable? II

Two different ways of understanding Broome’s argument:1. The value of health is not separable from overall

wellbeing and cannot be measured independently.

2. We cannot measure health independently of overall wellbeing.

Do health measures measure health? Or the value of health?

Measures of Health and Distributional Values

If summary measures of population health (SMPH) such as the DALY take environments into account, the results will be different for the rich and for the poor.

Does PTO incorporate preferences over different ways of using resources, and therefore incorporate fairness?

Which Distributional Values?

Total good (maximization) Distribution of the good

– Equality– Aggregation of small benefits vs fewer large ones– Priority to the worst-off

Constraints on Distribution– “Fair Chances” (e.g. lotteries)– Urgency

Sources of Values I

What is a “value”?– Individual preference?– “Social preference”?– Something other than a preference: e.g. a

considered judgment?

Sources of Values II

Where do we look to get the values that go into SMPH and that guide allocation based on SMPH?– Individual preferences, including

Disability weights reflecting preferences among states Distributional values, e.g. equality, or priority for the worst-

off

– “Expert” judgment? – Moral theories?

Ethical Controversies I

Life extension for Disabled vs Nondisabled Which yields the healthiest population?

– Extending the life of a healthy person– Extending the life of a disabled person

Does GBD favor the former? Cf. PTO-1 vs PTO-2 controversy

Ethical Controversies II

Issues involving Age and Time:

1. Age-weighting– Is the loss of life at infancy or in old age as great a

tragedy as the loss of life on one’s prime?– What source for these valuations? Is this mere

preference?– What if the valuations reflect concerns for

dependents – should this enter into a health measure?

Ethical Controversies III

2. Issues involving Age and Time: Discounting– Future costs are routinely (and properly)

discounted – Should health benefits (e.g. YL) be discounted?

3. “Fair Innings”– Should life after 70 be counted on a par with life

before?

Ethical Controversies IV

Ranking inequalities Which measures of inequality are appropriate

in population health? Temkin: There are nine principal egalitarian

concepts; we may be using several at any given time.

How do we choose? E.g. WHO staff poll

According to your opinion, which of the two populations has greater health inequality?

According to your opinion, which of the two populations has greater health inequality?

According to your opinion, which of the two populations has greater health inequality?

According to your opinion, which of the two populations has greater health inequality?

Which of the two populations do you think has a greater decrease in health inequality?

Which of the two populations do you think has a greater increase in health inequality?

Which of the two populations do you think has a greater decrease in health inequality?

Which of the two populations do you think has a greater decrease in health inequality?

Ethical Controversies V

What to do about inequalities:– Narrow gaps?

How much? What priority over e.g. overall gains in population health?

– Maximize the minimum? Even if this widens the gap?

– Uneven improvement: OK if some get there before others do? Or must all rise in lockstep?

GBD and Neoliberalism

Does GBD represent:– a turn away from health (health for all)– a turn toward “return on investment”

With thanks to…

Sarah Marchand Dan Brock Christopher Murray