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 vs Ethical 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?

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?

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