Build The Future, Together

1/25 How We Build the Future, Together The Opening Pitch was an invitation to get out of the stands and onto the field. So, what happens once we're here? Build the Future, Together isn't about predicting the future. And it certainly isn't about me telling you what the future ought to be.

1/37 Wednesday’s Wisdom 1.3 Science, Ethics, and the Choices We Make As we learn how to do more, how do we decide what we ought to do? And who gets to participate in that decision? Let’s give the care behind our curiosity some attention.

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salk.eduAbout Jonas Salk – Salk InstituteAbout Jonas Salk – Salk InstituteFounded by polio vaccine developer Jonas Salk, the Salk Institute is an independent, nonprofit organization. We drive foundational, risk-taking research that addresses society’s most pressing challeng...

36/37 Sources • Polio vaccination and the Cutter incident Salk Institute: www.salk.edu/about/histor... CDC: www.cdc.gov/vaccine-safe...

37/37 Suggested reading • The Belmont Report Begin with Part B: respect for persons, beneficence, and justice. A framework for questions of consent, risk, and who benefits. www.hhs.gov/ohrp/regulat...

hhs.govhhs.gov

encyclopedia.ushmm.orgNazi Medical Experiments | Holocaust EncyclopediaGerman physicians conducted inhumane experiments on prisoners in the camps during the Holocaust. Learn more about Nazi medical experiments during WW2.

34/37 Sources • Nazi medical experiments and the Nuremberg Code United States Holocaust Memorial Museum: encyclopedia.ushmm.org/content/en/a... encyclopedia.ushmm.org/content/en/a...

cdc.govAbout The Untreated Syphilis Study at TuskegeeLearn more about the Untreated Syphilis Study at Tuskegee.

35/37 Sources • Tuskegee and Oppenheimer CDC: www.cdc.gov/tuskegee/abo... National Park Service: www.nps.gov/articles/000...

32/37 When we say that a discovery will benefit humanity, how are we making room for the people affected to help decide what that benefit should look like? Sources and suggested reading follow. Join the conversation; personal medical details can remain private.

nlm.nih.govGreek MedicineHMD Greek Medicine Exhibition

33/37 Sources • Hippocratic Oath National Library of Medicine, including Michael North’s translation: www.nlm.nih.gov/hmd/topics/g...

30/37 We do not need to agree that humanity has been getting worse to decide we want to do better. We can begin where we are, consider what our choices have produced, and ask what would help us reach a future with less unnecessary suffering and more room for people to flourish.

31/37 On Friday, we will bring these questions into our discussion of AI and other technologies taking shape. A stated intention needs practices that support it, and people who can call attention to the gap when those practices fall short.

28/37 My experience gives these principles practical meaning. I can contribute to something that may help others while having my own well-being taken seriously. My ability to make decisions, and the researchers’ responsibility to care for me, continue throughout the process.

29/37 These questions belong in ordinary decisions, too. A workplace can ask those who will use a new system what problems they anticipate. A community can seek out neighbors whose needs are easiest to overlook—while there is still time to incorporate what they learn.

26/37 I am fairly compensated, and those conducting the trial respect my participation as a choice I am free to reconsider. I can withdraw at any time.

27/37 The researchers have also committed to ending my participation if it is clearly harmful and to taking responsibility for harm caused by my participation. Those commitments are part of the conditions under which I have agreed to take part.

24/37 If a discovery can help people, who will be able to obtain that help? If developing it involves risks, who will be asked to bear them? How much say will those people have?

25/37 In the interest of full disclosure, I have a personal connection to this subject. I am a voluntary participant in a clinical trial for an investigational drug. I understand the good my participation may represent for others, along with the risks it may represent to me.

22/37 The affected vaccine was recalled, and the incident led to stronger regulation and oversight. A commitment to preventing suffering includes investigating and correcting harm caused along the way. We can choose to help—and examine whether our methods do what we intend.

23/37 The 1979 Belmont Report identifies three central principles for research involving people: respect for persons, beneficence, and justice. These concern people’s choices, promoting well-being while reducing harm, and fairly distributing research’s burdens and benefits.

20/37 Polio vaccination offers a powerful example. Jonas Salk and his University of Pittsburgh colleagues developed a vaccine with support from the National Foundation for Infantile Paralysis, now the March of Dimes. Successful field-trial results were announced on April 12, 1955.

21/37 Scientific work, public support, and participating families helped make protection against a feared disease possible. That history also requires honesty: in the 1955 Cutter incident, some manufactured batches contained live poliovirus and caused polio, including paralysis.

18/37 Weapons development and medical research have different circumstances. What connects them here is responsibility when technical ability gives some people extraordinary power over others’ lives. Who is considering the people who will live with the consequences?

19/37 No individual can predict everything that follows a discovery. That uncertainty gives us reason to invite more perspectives, examine foreseeable harms, and establish ways to change course as we learn. What suffering might we be able to prevent?

16/37 In a 1965 interview, J. Robert Oppenheimer recalled the Trinity test of 1945 and a passage from the Bhagavad Gita: “Now I am become Death, the destroyer of worlds.” This was his later account of what had come to mind at the test.

17/37 After the war, Oppenheimer advocated international control of atomic weapons. His record also includes discussions of Japanese targets and pride in the project’s achievement. A single quotation cannot contain that complicated history.

14/37 Racism and institutional authority helped place researchers’ purposes above the men’s ability to make informed decisions about their lives. We need to examine who holds power, who can challenge a decision, and whose concerns receive a response.

15/37 The atomic bomb brought another dimension of responsibility into view. Scientific and engineering achievement could produce consequences reaching far beyond the people who designed an experiment or agreed to participate in one.

12/37 The men were not deliberately infected for the study. Researchers failed to obtain informed consent and did not offer available treatment, even after penicillin became widely available. Participants were told they were being treated for “bad blood.”

13/37 The study continued for decades after the Nuremberg Code was written. We cannot tell this history as though one terrible chapter ended, a lesson was learned, and everyone thereafter was protected.

10/37 Does the person understand what is proposed? Can they refuse without punishment? What would cause the researcher to stop? An ethical commitment becomes more useful when it changes what someone is actually permitted to do.

11/37 And yet, writing down a principle does not ensure people will follow it. In Alabama, the U.S. Public Health Service’s study of untreated syphilis at Tuskegee continued from 1932 until 1972. It enrolled 600 Black men, 399 of whom already had syphilis.

8/37 Calling something an experiment does not establish its scientific merit or grant it moral legitimacy. These people had lives and relationships beyond anything recorded in researchers’ notes. Their captivity gave the perpetrators power over them. It gave them no right to use it this way.

9/37 The 1947 Nuremberg Code emerged from the Doctors’ Trial after the war. It placed voluntary consent first, addressed unnecessary suffering and the relationship between risk and humanitarian importance, and identified circumstances requiring an experiment to end.

6/37 That last possibility deserves some attention. When I decide what is good for someone else, how much room have I left for that person to tell me?

7/37 During the Holocaust, Nazi physicians and researchers subjected concentration camp prisoners to experiments without their consent. Many victims died; others endured lasting injuries. These abuses included procedures serving racist ideology.

4/37 The connection between knowledge and responsibility is an old one. The Hippocratic Oath commits physicians to benefit the sick and avoid harm and injustice. The familiar phrase “First, do no harm” does not appear in those exact words in the ancient oath.

5/37 The oath has been revised across the centuries. We can inherit a commitment to care while remaining willing to examine how we practice it. Knowing more may reveal harm in something once considered helpful—or priorities we failed to consider.

2/37 We have spent two weeks exploring knowledge carried forward from the past, discoveries opening possibilities today, and small experiments we can try ourselves. Along the way, we have kept returning to the importance of care.