On Thursday, Professor Alondra Nelson spoke about the politics of ethics in the Obama administration and the Precision Medicine Initiative.
During the Obama administration, the Office of Science and Technology Policy, or OSTP, was larger than ever before with 130 staffers at its peak compared to its usual forty or fifty.
That’s just one example that Professor Alondra Nelson provided to illustrate how important science and technology was to this administration.
“What’s clear is that science and technology, health, and medicine were sorts of hallmarks of the work that this administration did,” said Nelson, the featured speaker for the Bahá’í Chair for World Peace’s annual lecture.
In her lecture “Even a Moon Shot Needs a Flight Plan: Genetics and Ethics in the Obama Administration,” Nelson delved into the development of an ethical framework around federal science during Obama’s presidency.
Nelson is a renowned author, sociologist, and the President of the Social Science Research Council and Harold F. Linder Professor at the Institute for Advanced Study in Princeton, N.J. Her topic comes from an unfinished chapter from the book she is currently writing about science and technology policy in the Obama administration.
Each year for its annual lecture, the Bahá’í Chair invites a distinguished scholar whose work addresses issues that tie into the program’s purpose: to promote ideas for people to consider in how to make the world a better place, University of Maryland professor Hoda Mahmoudi said when introducing Nelson.
Mahmoudi, who serves as the Bahá’í Chair for World Peace at this university, said Nelson’s lecture is important to the program as it examines how the government should consider ethics during its functioning deliberations.
“In relation to what science is finding out about many areas about human beings, it’s really important to have the ethics upfront, rather than just keep going with the science,” Mahmoudi said.
Photo by Gabrielle Lewis
Nelson began her lecture by illustrating Obama’s push for a relationship between ethics and science, even from the beginning of his presidency. In his 2009 speech at the University of Notre Dame, he said that healthcare policies should be grounded in both sound science and clear ethics.
“There’s an endeavor here to tie science and ethics or reason and ethics together not as being sort of opposites or polar opposites, but having actually everything to do with each other,” Nelson said.
The government has made past efforts to examine the ethical, legal and social implications (ELSI) of projects, such as the Human Genome Project from 1990. The government agencies who ran this program dedicated a percentage of the budget to the project’s ELSI.
“Pretty much any scientific field today that’s federally funded comes with some sort of ELSI piece,” Nelson said.
Obama’s administration reflected ELSI’s purpose and Obama’s own goal of tying ethics and science together by expanding the OSTP.
Nelson acknowledged that during the recent presidential transition, many felt that the Obama administration’s emphasis on science had been lost. While Obama assigned a director to his OSTP within his first few months in office, the Trump OSTP didn’t fill that position until January 2019, two years after it reopened.
Photo by Gabrielle Lewis
The Obama administration also sought to connect ethics and science through a moonshot for the administration: the Precision Medicine Initiative.
The Precision Medicine Initiative is a research program that aims to better treat diseases based on individuals’ genetics, environments, and lifestyles. The ethical framework surrounding the initiative comes from how the administration wrote about it, Nelson said.
Obama wanted to ensure participants’ rights, such as being able to view their own genetic information and research that uses that information, as well as deliberately over sample communities of color who usually weren’t included in genetic databases.
Even if people believe that databases need to be more statistically robust and egalitarian, “we’re still lagging far behind,” Nelson said. “And so, one can understand why all of us would be in an endeavor to make these databases in part more diverse.”
Photo by Gabrielle Lewis
For Dr. Katherine Russell, Associate Dean of the College of Behavioral and Social Sciences, this lecture was the first time she heard Nelson speak.
“I knew he [Obama] had done a lot with respect to pushing a technology and science agenda, but I hadn’t really thought about that in the context that she presented it,” Russell said.
Emily Gorey, a senior marketing major and the marketing specialist for the Bahá’í Chair, said that she was surprised that such an important topic, the ethical framing of science, wasn’t being widely discussed.
“Those issues that go unnoticed are kind of the most important to talk about,” Gorey said. “The fact of thinking about ethics and designing experiments kind of extends to your daily life.”
Nelson concluded by mentioning another flight plan for the moonshot of precision medicine for genetic research: the Universal Declaration on the Human Genome and Human Rights from 1997.
Like ELSI, the declaration provided a way of thinking about genetic research with “an ethical and moral orientation” and reflect the same ethics that Obama wanted for the Precision Medicine Initiative.