Science is experiencing a boost in enthusiasm and participation from the Citizen Science Movement. For those familiar it conjures up images of kids, adults and seniors counting birds or counting stars at night. Having thousands of eyes and ears all over the globe helping a team of scientists collect or sort through piles of data is so amazing. And impactful and evolving. Not only can you help collect data but you can be apart of the research, too. Projects like Your Wild Life allow you sample species in your navel, under your arm and on your kitchen counter. However, decentralizing the scientific process doesn't mean that the rules of ethics don't apply. Indeed Citizen Science becomes more popular and diverse, scientists are working diligently to stay ahead of the Ethics Curve.
World's FIRST citizen science project to sequence the human microbiome. Available INTERNATIONALLY in 196 countries. Learn about your health & change the world!
Now enter the IRB Ethical Debate. Boundary Layer Physiology (here, here, here) Comradde Physioprof (here, here, here), Drugmonkey (here), Janet Stemwedel (here), Peter Lipson (here) all had plenty to say. Short story: It's complicated. uBiome, said Citizen Science Project would like to collect and analyze microbes living on our body. It is an exciting sounding project and I completely see how they were able to raise over $300K to fund it. But the Doctors and Physiologists (and some Ethicists, too) raised an eye brow or two. The campaigners weren’t very upfront about how they address ethical issues since they were working with human subjects.
It sounds awesome, right? So, what’s the big deal. For the average person, everything looks and sounds fine. You donate some money, you get a kit, you swab yourself, you *knowlingly* participate, you learn some cool stuff about yourself and contribute to science. What’s not awesome about that?
Well, it’s a little thing, but it matters SO much: You must have ALL of your bases covered, even the ones nobody will likely reach. You must do this first. You must be upfront about everything you are or will do. You must be completely UNAMBIGUOUS. No matter how innocent and benign things may seem or be, you must handle all of the details related to safety, privacy, risk and you put it out there for EVERYBODY to see and criticize before you announce or open for business. Kind of like this:
The Twitter back and forth with the uBiome CEO really suggested the organization was a little defensive. And to a non-scientist perhaps the Physiology Bloggers did come on heavy handed. But the thing is, there is no light way address Ethical issues. At. ALL. We scientists have rules. These rules are not only for the research project at hand but for the sake of the entire discipline. When one person gets out of line, we ALL take a hit for it, get scrutinized and in some cases demonized for not being ethical.
This is an issue I address often as an African-American researcher. I struggle constantly and earnestly to present science and research as an inclusive and plural enterprise. Most of my folks don’t trust human research of any kind – invasive, observational, even educational research that only requires answering questions on a test. NOTHING! The biggest challenges I deal with is convincing them that the rules and oversight for science medical research 1) exist – there were no such rules during the Tuskegee experiments, 2) are taken seriously by all professionals and 3) are strictly enforced with oversight by other scientists and the government.
As a scientist it is essential that we are the first ones to call out something that doesn't seem right. People closest to the infraction are expected to be the first to nip things in the bud. Addressing the situation directly, unambiguously and yes sometimes vehemently is required, even for the most simple and minor infractions. That isn’t to say that people will be excommunicated from school or science for little things, but it about jerking chains. uBiome go their chains jerked and they didn't like it. Frankly, they weren't supposed to.
You see, scientists are NOT inherently ethical. Plus, ethics are not static. They change and are subject to context and human fallibility. Even in our most honest and sincere intentions we – Scientists – can still run afoul. And it often starts innocently and small. Left unchecked things can get bad, and they have gotten bad before.
Spring 2011 I lead a three-part book discussion of Rebecca Skloot's The Immortal Life of Henrietta Lacks. Ethics, Accessibility, and Faith were three of the major themes presented in The Immortal Life of Henrietta Lacks by Rebecca Skloot and each of the book discussions titled -- Confronting Science: African American Perceptions of Science and Medical Research. These themes are also major filters through which many African-Americans (and other ethnic minority individuals) view science today.
For me the book revealed seven major ethical issues of science and medical research that plagued the doctors and researchers in The Immortal Life and today's researchers continue to grapple with these issues, too. (Link to full set of book discussion questions on Ethics here.)
1.Consent and Informed Consent
Sometimes we, Scientists, assume that “For the sake of Science” is the highest value possible. Our training to disassociate with subjects and focus on unbiased questions and yield concise, clear details we can become blind to the pain of others. I call this Blind Objectivity and it is as dangerous to the success of an experiment as prejudice is.
Using The Immortal Life as a discussion/study tool, in Chapter 7. The Death and Life of Cell Culture, we learn that Dr. Gey begins sending HeLa cells all over the world to anyone wanting to do cancer research. Researchers could do to the cells “what would have been impossible with a living human being.”
By today’s ethical standards, researchers are required to reduce exposure to any experiment to a living organism (whether human or animal) where ever possible. HeLa cells make it possible to try out all kinds of potentially dangerous treatments without harming a person. But at what cost did the research community make this ethical gain? Was it a fair trade-off, in light of the pain and exploitation of Mrs. Lacks and her family?
Gey is a lot like most researchers who find something neat and wants to spread the word. I doubt he would have imagined the ethical fiasco he birthed. Not accusing the uBiome team of any notions of down-the-road wrong-doing, but seriously how are you all making sure your volunteers will not be exploited by you or others in the future?
In Chapter 12. The Storm. Mary Kubicek was Gey’s laboratory technician who did the bulk of the cell culture work with HeLa cells. She handled her tumor and watched it grow. Mary was also present to collect more tumor samples from Mrs. Lacks’ body at her autopsy. She reveals how she doesn’t really realize that HeLa cells come from a real person until this moment:
“When I saw those toenails, I nearly fainted. I thought, Oh geez, she’s real person. I started imagining her sitting in her bathroom painting those toenails, and it hit me for the first time that those se cells we’d been working with all of this time and sending all over the world, they can from a live woman. I’d never thought of it that way”.
Researchers are taught to remain objective when designing and completing experiments. This is especially true when dealing with living subjects. How might the dissociation of researchers have paved the way to other ethical breeches we learn about in the book?
In science, the pursuit of data can consume a researcher. It seemed as if the Gey lab was set on getting additional cells from Mrs. Lacks post-mortem. Researchers asked Mr. David Lacks for permission to harvest more cells from Mrs. Lacks and he said no. They didn’t let up until they got what they wanted, because it was for the good of science.
Do you think it was ethical for the researchers to continue to ask Mr. Lacks after he said no? Was it unethical of them to deceive him and say the research might help his children?
Years later, researchers would continue to collect samples from the rest of the family, bothering them, frightening them.
Does ‘to the benefit of science and the public good’ really justify actions of Gey, TeLinde and the other researchers and HeLa cell manufacturers who benefited from Mrs. Lacks and failed to consider her family?
Does this explanation justify it for anyone? Are there ways we can protect people, even from ourselves?
To that last question, I say yes. Science isn’t a sterile industry, but together we make it better and accountable. I commend Melissa Bates, Dr Free Ride, Drug Monkey, Peter Lipson, Comradde Physio Prof and others for holding the UBiome team accountable. Together, we make science safe for everyone.