In 1927, the ethicality of eugenics faced a major test in the U.S. Supreme Court. Eugenics won, and Carrie Buck was the victim.
The historic Buck v. Bell case legitimized the forced sterilization of Buck under a Virginia state statute. Their reasoning — Buck was “feebleminded.” She would become one of many victims of the rampant eugenics movement that swept America in the 1900s, as more than 30 states created forced sterilization policies.
Eugenics is the practice of removing undesirable traits from a population, which most associate as a staple of the Nazi party. But they originally drew inspiration from the U.S., where eugenics advocated for the sterilization of over 100,000 cognitively impaired people, including over 1,900 people in Wisconsin.
Among the advocates for these sterilization policies, one hits close to home, with University of Wisconsin President Charles Van Hise supporting eugenic practices.
“Human defectives should no longer be allowed to propagate the race,” Van Hise wrote in 1910.
A century later, UW has forged a path in an entirely different direction.
UW is at the forefront of ethical discussions designed to avoid future eugenic situations and propel the advancement of society. The rise of bioethics was largely due to work UW started 50 years ago — work that continues to thrive today as the university researchers strive to carve a morally-just route in the face of increasingly complex clashes between social responsibility and science.
The Rise of Bioethics
UW Emeritus pediatrics professor Norman Fost first came to UW in 1973 driven by the prospect of kickstarting a bioethics program. Bioethics was — and still is — a relatively new discipline in the world of research and Fost wanted to be at the forefront of those novel discussions. He yearned to pursue a career in pediatrics and bioethics so he could dive into the scientific process and associated ethical discussions.
“When I was in college, there was no such field. In fact, the word ‘bioethics’ was invented at the University of Wisconsin,” Fost said. Fost founded the UW bioethics department and spent many years of his career chairing both the UW Institutional Review Board and Hospital and Clinic Ethics Committee.
One issue Fost was particularly interested in early in his career was the question of how and when to treat critically-ill infants. Fost and his colleague proposed hospitals assemble ethics committees in order to oversee the decision making in difficult situations like giving or withdrawing life sustaining treatments.
Before their recommendation, situations of ethical relevance were typically dealt with on an individual scale, Fost said.
“That’s a dramatic difference in the way these decisions were made back in the 60s and 70s,” Fost said. “They were made just by individual doctors and family members in private with very little outside scrutiny.”
Since the rise of bioethics, ethical decisions regarding scientific issues are addressed more effectively. The field opened up a world for discussion and input from many people across a variety of different backgrounds, Fost said, making sure certain issues don’t get overlooked.
Fost said one person does not have the capacity to fully see an issue from every perspective, so it’s important to have committees to bring together multiple viewpoints.
“All these issues that comprise the field of bioethics now have the attention of people from diverse areas to think about it and make suggestions,” he said. “It’s resulted in dramatic changes in the practice of medicine and the practice of science and research.The world is very different than it was 50 years ago because of bioethics.”
Fifty years ago, Fost played an integral role in building up the bioethics department at UW to what it is today. He said it may now be the largest bioethics program in the country, with seven full time faculty consisting of doctors, lawyers and philosophers all dedicated to bioethics. This field attracts minds from all sorts of backgrounds.
Within the vast world of scientific ethical domains, UW philosophy and bioethics professor Robert Streiffer focuses his research on prominent topics like human embryonic stem cell research, the use of biotechnology in the food supply, ethical use of animals in research and CRISPR — which is an emerging gene editing technology
With this in mind, Streiffer said the opportunity for synergy is important, as scientists tend to have experience and knowledge on these issues which provides valuable insight.
“If we collaborate, we can end up with education, motivation and solutions that are better than if either group tries to do it on their own,” Streiffer said.
Gene Editing and Ethics
With science accelerating far beyond what could’ve been fathomed at the dawn of the bioethics department at UW, the field has continued to prove its value. Controversies often arise in scientific research, resulting in the need for enhanced discussion to find answers in a sea of ambiguity.
For example, in 2018, Chinese biophysicist He Jiankui announced he used CRISPR to alter the DNA of a set of twins to make them immune to infection from HIV. Some in the scientific community responded with backlash, arguing he crossed a line by potentially exposing the twins to significant unknown risks.
Amid the debate, UW Emerita professor of law and bioethics R. Alta Charo helped organize the second International Summit On Human Genome Editing, where she called the use of gene editing “misguided, premature, unnecessary and largely useless,” according to NPR.
“I think [Jiankui] ran afoul of several almost boring norms, in terms of informed consent, safety and efficacy — things like that, that we normally want to insist upon before we try to use procedures on people,” Streiffer said about Jiankui’s actions.
Associate professor of biomedical engineering Kris Saha researches biomedical technologies for therapeutic purposes. His lab works on new tools for genome editing, with a particular focus on editing the genetic code of human cells.
While Streiffer said Jiankui’s extradition went against the standard codes of conduct for experiments and issues like informed consent, Saha said the experiment will have poor outcomes because Jiankui did not make the intended edits.
“Those twins have unknown risks to various types of infectious disease as a result of the mutations they got from the editing outcome,” Saha said. “I don’t see that as a success in anyone’s book.”
This experiment displays the controversy behind the research and development of CRISPR technology for human genome editing. Lying at the heart of ethical conversations about human genome editing are two different techniques — somatic and germline editing.
Germline editing alters the genetic code of an embryo such that every cell in the body will contain the edited code, Saha said, and these edits are passed down to future generations. On the other hand, current research and development of genome editing mostly sticks to somatic editing, which does not result in permanent changes down a line of succession.
“Certainly in terms of where I think research and development focus and effort should go, there’s plenty of questions to ask and answer there,” Saha said. “Jumping into germline editing is needed arguably in a very small number of cases.”
Saha sees potential in the field of CRISPR research and believes sticking to somatic editing may provide benefits which could then be applied to germline editing. These benefits could be disease prevention, which would only require a one time intervention as opposed to a lifetime of drug treatments.
From an ethical perspective, Streiffer doesn’t see anything particularly unique surrounding CRISPR. Genome editing has been around for a while and there are several ways to do it — CRISPR is just a relatively new technology on the lifeline of genetics research, in his view.
“Any alteration that we make in people, ranging from changes in how we educate them to how we raise them to what drugs we give them, it all has risks,” Streiffer said. “We try to make sure that the risks we run are justified, but nothing is risk free.”
A myriad of genome editing studies described in Scientific American are in progress. In July 2019, the pharmaceutical company Allergan partnered with genome editing company Editas Medicine, announcing the beginning of participant enrollment for a clinical trial to treat a common genetic form of child blindness.
Editas’ Chief Scientific Officer Charles Albright said the company addressed the risks and is confident with safe and effective treatment in the trials.
“We did a whole bunch of preclinical studies that increased our confidence that we understood how to use the medicine and that we had a good chance of providing therapeutic benefit,” Albright said to the Scientific American.
With widespread use on the horizon, CRISPR will show itself to be a ubiquitous technology for genome editing. Applying ethics can steer it down a moral path to truly reap the benefits of its applications.
CRISPR is an effective technology — but that doesn’t exempt it from error. DNA could be improperly cut or gene edits could cause unintended mutations. In the current environment, the risks are well identified, Streiffer said. But should edits yield poor results, they could be permanent for either the individual or their future generations.
“If we could show that genetically engineering somebody could protect them from some common communicable disease at no greater risk than a vaccine or drug, then I think there’s no special reason not to do it,” Streiffer said.
Approaching the ethical debate regarding genome editing will be essential to advancing this research in a safe and effective manner.
Saha said the research in this area needs to be guided with “guardrails,” which shouldn’t solely be determined by scientists but through dialogue with the public.
“I personally think everyone, including scientists, has a responsibility to think about where to guide the frontiers of research,” Saha said. “In some ways that’s more heavily enabled by taxpayer money — the public does have a stake in what we do with this technology.”
Animal use ethics
Input from a variety of backgrounds is necessary to bioethics, but the field also aims to advocate against all forms of unethical research. One particular field of interest is the use of animals in research.
A proposed research project at UW several years ago planned to take baby monkeys away from their mothers to induce an anxious phenotype, Streiffer said. But this project resulted in public backlash and ultimately the study did not happen even after approval from the necessary committees.
Kelsey Eberly was the lead attorney in a lawsuit from The Animal League Defense Fund filed against UW. The case centered around the approval process and allegedly withheld experiment records, Eberly said to The Badger Herald in 2015.
“We are committed to openness and we will continue to fight for complete transparency in how taxpayer dollars are used to support invasive animal research,” Eberly said.
The research stirred up public reaction, which manifested into 400,000 petition signatures, Eberly said.
The case captures the influence of public input on research ethics. Even with official approval, society didn’t deem the study to be an ethical application of animal research. Streiffer said the public concern likely influenced the ultimate decision to block the study.
Animals are used in research studies as frequently as humans are, but in the case of animal research, informed consent cannot be given, UW associate professor of experimental pathology Eric Sandgren said.
Researchers are responsible for their animal subjects and they must take care to conduct their research properly, Sandgren said. A continued and open discussion about the approach to animal use in research is necessary and the consequences — good or bad — must be thought out and prepared for.
“They [animal research studies] all have consequences, and you can’t just look at the plus or the minus. You have to look at the plus and the minus,” Sandgren said.
Sandgren focused his studies on cancer genetics in mouse models before he chaired the UW Animal Care and Use Committee, a group that oversees and authorizes any projects — research or educational — involving the use of animals. Eventually, he became the Director of the UW Research Animal Resources Center.
In his years of experience, Sandgren noticed a similar value in opposing sides in the debates about animal research — both sides care about the wellbeing of animals. While he believes animal research is acceptable under the right circumstances, he accepts people with the view animals shouldn’t be used in research.
“[Veterinary students] all care about those animals. They understand that they are creatures that can feel and they want to make things as good as possible for them,” Sandgren said. “That I think is the key.”
The ethical debates in animal research often deal with defining animals and their moral status relative to humans, Sandgren said. Once the moral standing is established, researchers need to decide what that means.
To address animal welfare, the five freedoms of animal welfare lay out the standards for treatment of a living being. They include freedom from hunger and thirst, freedom from discomfort, freedom from pain, injury or disease, freedom to express normal behavior and freedom from fear and distress.
“The five freedoms I think is one way of looking at the issue of what we owe the animals,” Sandgren said.
One example of the freedom to express normal behavior can be seen in agriculture.
Modern systems don’t allow turkeys or chickens to brood over their nest, as to maximize the egg production. Streiffer said this practice is known to frustrate the birds and a UW researcher discovered a genetic method that removes turkeys’ instinct to brood over the nest. In this scenario, changing the nature of the turkey could be ethically and morally wrong. Some suggest the system should change to accommodate the turkeys, Streiffer said, yet some believe it’s best for the bird to not feel frustrated at all.
“How you analyze that situation does depend on how you understand the welfare of animals. Whether it includes things like the exhibition of natural behaviors. Some people say yes, and some people say no,” Streiffer said. “That’s a topic that both philosophers and scientists have weighed in on.”
Animal research has a fraught history, Streiffer said. Some ethicists in this area of research believe the field continues to exhibit unethical practices.
Sandgren said he believes the argument against animal research is one of rights and natural unknowns. People believe scientists don’t know what the animals think and feel about the studies they go through and because of that, animals have a right not to be used for studies.
With that argument in mind, those against animal research need to support their argument with evidence of how animals are different from humans and why that means they shouldn’t be used in research, Sandgren said. Thus the ethical discussion surrounding animal use would be carried out with different perspectives while considering the scientific data.
“The state of the discussion mirrors the state of many discussions in our country right now. Polarized groups that are deathly afraid of acknowledging any positivity in the other side, and are demonizing the other side” Sandgren said. “That’s a stupid, nondemocratic way to move forward.”
The State of Bioethics Today
In the realm of academia, only a relatively short time has passed since Fost created the UW bioethics program. The influential journey to present day was supported by UW.
“I’ve been living out this fantasy that 50 years ago didn’t exist at the time. And it’s just been a pleasure and I’m incredibly grateful to the university responsible for providing the resources,” Fost said. “UW really was a pioneer in supporting such a program from the beginning and continuing to support it over the last 45 years or so.”
Now, the field stands alone as a guiding force for scientific discovery. Still, as much as bioethics critiques the science it observes, it’s not without its own flaws.
Risks and benefits shape the field of bioethics today, Sandgren said, but unpredictable outcomes are inevitable in science. The decision to proceed or not with a study is a judgement call and this call could be better informed with intense scrutiny that plays out as a balancing act.
Bioethics is an evolving field and the debate across many different fields and areas of study will undoubtedly continue.
At UW where it all began, researchers in bioethics continue to hope open conversations and criticism will lead to better discussions, better decisions and ultimately better results.
“Ethics is critical. It’s one of the components of how we decide as a society what to do. Science is critical too — that’s another one — we need to know what we can get from it and what we can’t get from it, and what the costs are from it,” Sandgren said. “We pull science and ethics together — that’s how we make a decision. Not just one or the other.”