Reflections on previous Spokane Community Conversations
reflection on Brain-computer interfaces: Ethical challenges and opportunities April 10, 2018
Facilitated by Kevin Measor, PhD, Gonzaga University, and Jen Wroblewski, MPH, NWABR
In a packed room at the back of a popular Spokane pub, we gathered not for a birthday party or alumni gathering. Undergrads, science-enthusiasts, medical students, business owners and professors wedged into a crowded pub to talk about the emerging technology of brain-computer interfaces (BCI). Dr. Kevin Measor, faculty at Gonzaga and founder of the Spokane Center for Public Neuroscience Education, led the discussion.
The ability to record brain activity and use this information to control devices like computers, wheelchairs, and brain stimulators is a goal of brain-computer interface (BCI) research. With this technology comes great promise to improve people’s lives, but will the introduction of BCI devices into medicine and beyond raise ethical concerns? What brain data is private? Will these devices lead to human enhancement? Who will have access to expensive BCI devices? Will this technology raise questions of identity and what makes us human?
We tackled three key scenarios that illustrate currently available technology: (1) Deep Brain Stimulation (used to treat tremor in patients with Parkinson’s Disease) to treat mental/behavioural health issues, (2) Neuroprosthetics capable of interacting with the brain and prosthetic limb and (3) Neurofeedback recordings used to measure states of awareness in long-haul truck drivers.
Scenario #1. Should deep brain stimulation be used to alter undesireable, non-pathologic behavior? What about mandated treatment for pathologic behavior? Most agreed that if the science is solid, DBS should be offered but that no treatments should be forced on people. People did perceive a difference in mandated mental health treatment using medication versus DBS because of concerns that DBS may not be irreversible or that it may have in intended consequences.
Scenario #2. People with neuroprosthetics use their new limbs to restore, as best they can, what they have lost. There is an argument that BCI prosthetics actually enhance, rather than simply restore, the health of a user. In the case of athletes we wondered whether individuals using BCI prosthetics might have an advantage if they could program their ‘robo-limb’to resist fatigue, improve reaction time, etc. Most thought it would be more fair to offer separate competitions for people with BCI prosthetics. We were concerned though that BCI prosthetics will be more costly than traditional prosthetics, which are already 20-40K each. Access to this technology will be tricky, as will repairs to the hardware when it needs refurbishing.
Scenario #3. By far people were most interested in this scenario where long haul truck drivers would be monitored for their state of consciousness/awareness using a hat embedded with EED sensors. The sensors would send real time data to a control center to judge whether a driver is in a dangerous, sleepy state and would then order the driver to stop driving and rest. Similar technology may be useful for other professions such as soldiers and medical professionals working long shifts.
As a group we were split on the legality and usefulness of BCI for this purpose. It raised more questions than answers. For example, who is legally responsible in the event of a truck accident or medical mistake? Isn’t this an invasion of the employee’s privacy? Others felt that BCI could provide useful tools for employees in sleep-deprived professions to self-assess their job safety and provide data to justify changes in company policies. In the end, we arrived at a universal bioethics dilemma: which is more important….individual rights (autonomy) or public safety?
BCI has the power to restore individual agency, reduce suffering and improve human performance. On the other hand it raises concerns about privacy, access and power. Like any good discussion all we could say was…..IT DEPENDS!
Suggested readings and resources
What's in our water, who decides and why?
Tuesday january 16, 2018
Facilitated by Emily Firman, MPH, MSW (ARCORA) and Jen Wroblewski, MPH (NWABR)
The question of community water fluoridation (CWF) has been long debated in Spokane, WA. Citizens have voted three times on the matter and all times chosen not to introduce fluoride to the drinking water. The most recent vote in 2000 failed by 1%.
Given this history, I expected our Conversation last night to include some significant voices of opposition. It turns out that our audience was either neutral or in favor of CWF. Our attendees were mainly college or medical school students, public health officials and professors. This demographic has traditionally supported CWF. What WAS surprising was that many who attended did not know the historical opposition to CWF and did not understand why the benefits of CWF were even in question. Prior to the Conversation both NWABR and our partners received letters or queries from known opponents to CWF from California and Colorado. I had hoped some would attend the Conversation.
Attendees accepted that CWF has great benefit in strengthening tooth enamel and therefore reducing dental decay. They trust the judgment of most health authorities, who have either conducted their own observational population research or reviewed the research of others, who state that CWF is a safe and effective way to prevent and treat tooth decay.
Based on available data and personal stories, attendees perceived that it is more economical to offer CWF than to pay for the subsequent oral health costs of increased decay. Some studies cite that every dollar spent on CWF saves $38 on future health costs. The Spokesman Review cited in 2001 that installing CWF would cost about $1million with an additional $300,000 per year (Hansen, 2/12/2001). One attendee shared that she has 11 crowns, several implants and other dental work. She wondered, “maybe if I lived in an area with community water fluoridation this [amount of dental work] wouldn’t be the case.” She went on to say, “If I spent the money on my dental work, about $30,000, on fluoridation instead imagine the good I could have done!”
GREATEST GOOD VS. AUTONOMY
It’s a classic clash of two ethical principles in public health: maximizing good vs. autonomy (individual choice, determination). The clash fascinates me because it’s a natural dilemma at which groups of people arrive whether or not they have training in bioethics. “I don’t see why, if just a small percent of people are against it, the rest of the population shouldn’t have a voice when they want fluoridation.” While the attendees tonight strongly valued maximizing good, they also understood the argument for personal choice.
A medical student suggested that autonomy goes both ways. “People should have a choice on whether to consume water with fluoride, but so should people have the right to smile with comfort and have a pain free mouth.” Poignant.
COMPROMISE POSITION…the THIRD WAY
Someone suggested that the ethics of autonomy and maximizing community good didn’t have to be in conflict. She thought that perhaps the community water supply could remain nonfluoridated and people could have free access to fluoride drops or tablets.
Numerous comments unfolded about the success of this approach. A mother who moved to Spokane in 2000 just as the “no” vote emerged, said “I wanted fluoride for my kids in their water. I thought, ‘What sort of backwater place have we moved to?’” She went on to tell the story about administering fluoride drops to her kids. She thought that if some drops were good, more were better. Her son is now grown and has cosmetic fluorosis—but no cavities! When her kids were little the fluoride drops were a prescription and she had to provide a copay. She acknowledges that the copay system may prevent some people from accessing fluoride drops.
A physician in the group noted that patient compliance is not as good as he’d like and worries that leaving the administration of fluoride up to parents might not be broadly successful. This is even more true when you consider than only 50% of kids in Spokane see a dentist regularly. In addition, fluoride drops are not currently given to adults who would benefit from cavity reduction through remineralization of early cavities.
BENEFITS OF RESPECTFUL CONVERSATION
I was struck tonight by the impact of the information, stories and shared conversation among folks who largely agreed with one another. Evaluation comments indicate that people plan to take action on this issue. Attendees want to build relationships with those who oppose CWF, talk to their city councilpeople, share what they learned with friends and colleagues and invest their time and energy in this issue.
By together setting discussion ground rules, by presenting opposition perspectives and by encouraging any and all opinions, tonight’s Conversation had a strong impact. The secret? Strong science. Compassionate listening. Personal stories. Nuanced rather than binary thinking. Seeing one another as people first and opponents second. This Conversation was one of the best yet. With gratitude, Jen.
Suggested readings and resources
The opioid emergency: how did this happen and where do we go from here?
Tuesday october 3, 2017
Facilitated by Matt Layton, WSU College of Medicine and Aaron Putzke, Whitworth University
The opioid emergency is prominently in the news, both in Spokane and nationally. Conversation participants focused less on policy based and more on care based solutions. Because pain and addiction is a multifaceted problem, Conversation attendees agreed that when evaluating and treating pain/addiction approaches should be multimodal.
Another care based approach is to provide more effective public education about the benefits and risks of opioids, as well as open communication between healthcare providers, patients and families. FInally, attendees urged adequate access to health care to prevent pain and addiction; when addiction is already in play, it is important to diagnose it early.
-Note that many of the attendees were either medical students or working in the biomedical sciences. This certainly impacted the direction of the Conversation.
Are Vaccines Everybody’s Business?
March 2, 2017
Facilitated by Anna Halloran, Alexandra Hayes (both of Spokane Regional Health District) and Aaron Putzke (Whitworth)
NWABR’s Community Conversation achieved a significant goal during our “Vaccines” event in Spokane, WA last week. Conversation participants had both favorable and unfavorable viewpoints about childhood vaccinations. Several people remarked to the facilitator that they were pleasantly surprised that people holding different positions on vaccination were well educated and able to have a respectful dialogue with one another. Way to go, Spokane! When we dialogue respectfully with one another about controversies in science and medicine, or any topic for that matter, we can often find common ground while reinforcing the dignity and value of our neighbor. Better science, better public health, better relationships. Hence Community Conversation.
Spokane County, like King County in Western WA, has been hit hard by this winter’s mumps outbreak. As of March 1st, there were 550 probable and confirmed cases in WA state. In Washington, the public is well-vaccinated for mumps, at 86.3% in 2014, which has largely protected the community; had vaccination rates been lower, this outbreak would have been larger. During NWABR’s Community Conversation in Spokane last week, attendees discussed the outbreak along with other key points about childhood vaccinations.
Attendees were instructed to consider vaccinations and the weight of individual choice versus community good. Vaccinations are most protective for whole communities when the vaccination rate reaches a certain high percentage (the threshold differs for each infectious organism), meaning that nearly all individuals who CAN receive vaccinations DO receive them. Some individuals prefer to refuse vaccination for themselves or their children for a variety of reasons. What is up for debate is whether individuals should be able to refuse vaccination at the cost of not protecting their own kids and the broader community.
During our Conversation, attendees were not as concerned about this classic debate as they were about elevating the dialogue in order to benefit the public broadly. There were two (2) key discussion points. Some of the participants had personal experiences with what they perceived to be adverse vaccine reactions and are concerned about vaccine safety. They acknowledged that their experiences were at an individual level and that not all people will have this experience. Even so, they expressed the difficulty of identifying useful, reliable information about vaccines, their safety and potential side effects.
The second key point was that people want a better flow of information from public health authorities and primary care physicians to the public. The recent mumps outbreak has accentuated these challenges, noted by one family who homeschools their children and hope that communication is more streamlined in the future.
Suggested readings and resources
Watch documentary trailer
is violence is preventable, just like the flu?
december 6, 2016
Facilitated by Stacy Wenzl, Spokane Regional Health District
Attendees had trouble buying into the model that violence is very much like an infectious disease. That being said, people were hopeful that factors shown to protect from experiencing and initiating violence would reduce violence in the community. Protective factors include strong social support, being raised by parents with positive parenting skills, family support and having basic needs met.
Precious Gifts: The Stewardship of Fetal Tissue
Facilitated March 21, 2016 by Andrea Lazarus, PhD, Assistant VP for Research, Washington State University
In late March our Spokane Community Conversation featured the difficult topic of fetal tissue research (FTR) and the fallout from the undercover, edited videos released by the Center for Medical Progress. Attendees included professors, mothers, mothers-to-be, students of debate, scientists, religious folks and a Planned Parenthood staff member.
Facilitator Dr. Andrea Lazarus, Assistant VP for Research at WSU, laid out some of the key issues with fetal tissue research.
- Fetal tissue (FT) comes from a dead human fetus aged from the end of the 8th week of pregnancy forward, obtained after a spontaneous or induced abortion, or after a stillbirth.
- Fetal tissue research is not a new method. It has been used to develop key vaccines including the polio vaccine, and is used in research to address infectious diseases, abnormal human development and neurodegenerative disease among others.
- Many people who are opposed to abortion are also opposed to the donation of fetal tissue from abortions for the purpose of research. Lazarus made it clear that abortion is legal and so is fetal tissue research. Both are highly regulated.
- Women who donate fetal tissue following abortion must give written informed consent AFTER they have given consent for an abortion.
- The undercover videos raised some issues:
a. One, the videos were heavily edited and were designed to paint Planned Parenthood and fetal tissue procurement companies in the worst possible light.
b. Two, they tried to implicate Planned Parenthood and third party procurement companies in the illegal selling of fetal tissue. These companies were not selling tissue, rather they were legally reimbursed to cover the costs incurred from transporting, implanting, processing, preserving, quality control, or storage of human fetal tissue (42 US Code 274e).
c. Three, they suggest that Planned Parenthood alters abortion procedures to obtain higher quality fetal tissue, which is against the law. To date there is no new information about whether this allegation is true or not.
d. The videos come across as speaking in a cavalier manner about abortion and the use of fetal tissue in research.
In our Conversation, four major discussion threads emerged. Attendees raised the question of whether fetal tissue is ethically somehow essentially different from other tissue types. A few attendees felt that the tissue deserved added moral value because it once held the potential to be a born human being. Some thought that FT should be scientifically elevated because of its unique qualities for biomedical research.
Attendees were also interested in how to make thoughtful, smart policies on issues like this when our population is divided. They argued that because a large portion of our society feels that FT is morally elevated, we still need to try to understand their feelings and show them respect. They want social harmony. On the other hand, they strongly feel that policies enabling FTR can benefit society while prohibiting FTR because of religious or personal reasons can actually cause harm. Some raised the question of how future policy-making will be influenced by our increasingly diverse country.
The third thread was the impact of low health and science literacy. Community Conversation participants were in strong agreement that low health and science literacy leads to the aggravation of these kinds of sensitive issues. The video sting and media attention got out ahead of good facts and prejudiced people before they could learn more about it.
Finally, we talked about the challenge of informed consent in this setting. How can a woman who has just consented to an abortion be in a frame of mind to give consent that is informed regarding the donation of her fetus’ tissue? At the same time, how can a woman be expected to return to a clinic, following a consent waiting period, to provide informed consent for donation of her fetal tissue? It is untenable for her and for the clinic, which would have to store the tissue not knowing whether or not it would eventually be donated. Many in the room felt that the informed consent process needs improvement.
IMPACT. Those in attendance were grateful for the opportunity to air out their thoughts on fetal tissue research. Several commented that the Conversation gave them the information and inspiration they need to talk to friends and family about FTR. Others were highly complimentary toward the public courage of our partners Eastern Washington University College of Health Science and Public Health, WSU Health Sciences Spokane and Whitworth University (our sponsor).
NWABR offers heartfelt thanks to our facilitator, our series sponsor Whitworth University and all those who were courageous enough to engage with this sensitive topic.
Suggested Readings and Resources
Reflection: Should we tinker with our DNA? January 19th
Facilitator Aaron Putzke, PhD, Whitworth University
Take action by completing this online survey about CRISPR/Cas9 technology in human gene editing
Over laughter and thai food, the Spokane Community Conversation kicked off 2016 with talk about human gene editing. While the capability and debate on gene editing is nothing new, CRISPR/Cas9 technology enables faster, more efficient and less expensive gene modification. This technology is on the global stage, and not just among scientists. Bioethicists are demanding the public’s input. I say good for them and good for society.
After viewing a short film on the CRISPR/Cas9 system, we launched into guided table conversation on the ‘shoulds, coulds, whys and whos’ of human gene editing. When it was time to transition to large group conversation, I had difficulty closing the table discussions, as participants were so intensely arguing their case to one another. During the share-out, where people from different tables weigh in on the overall Conversation, four themes emerged:
- Desire for social justice, similar to the Seattle Conversation.
- Torn between the desires of healing and safety, similar to the Seattle Conversation.
- Conflict about the kind of moral society in which people want to live, which was unique to Spokane.
- Desire for appropriate regulation of human gene modification, similar to the Seattle Conversation.
The table dominated by high school students was especially concerned about social justice. They wondered if (a long time down the road) curing all diseases would lead to exhaustion of the earth’s carrying capacity for humans. Many in the large group wondered if this technology would lead to cosmetic or physical enhancement for the wealthiest people, creating a kind of eugenics. Many were concerned that access to gene modification for treating, curing or preventing disease would be limited to privileged populations, further increasing wealth disparities.
There was a palpable tension between the desire for healing tangled up with the uncertain safety of modifying the human genome. I observed one very optimistic woman struggle with her changing perception about using CRISPR/Cas9 to prevent disease by modifying human embryos and allowing them to develop to live birth. Following one breath after the next, she thought this approach was justifiable, but then when taking into account mandatory safety testing of modified embryos being allowed to grow to full term, she was opposed. Participants were less concerned about safety testing in adults who could provide informed consent. Many heads nodded in assent when facilitator Aaron Putzke said, “whenever you are working with organisms, at some point you can lose control,” reflecting the idea that research and medicine with living things (plants, worms, fish, mice, people) is wrought with variability and uncertainty. So of course people want to eradicate nasty diseases, but they also worry about the safety of gene modification and unintended consequences.
Unique to the Spokane Conversation was a thought that perhaps this use of technology was not right for society. Paired closely with this thought was the question one attendee posed, “Is changing embryos getting too close to playing God?” There seemed to be a fundamental value in being human that would be negatively impacted, especially by modifying human embryos. Of course some attendees countered that humans already tinker with our DNA by using fertility treatments like in vitro fertilization to encourage live births that may otherwise not succeed.
Finally, we discussed whether, who and how human gene modification should be regulated. Many folks in the room strongly advocated for self-regulation by the scientific community. There was a notable distrust of government regulation. Others pointed out egregious failings of scientists and governments to conduct human clinical research in an ethical, just and trustworthy manner.
I had a blast at this Conversation. Attendees were smart, wanted to learn, and want to contribute to society. Facilitator Dr. Aaron Putzke, who is also teaching a course on this topic at Whitworth University, led an excellent Conversation and kept the dialogue flowing. It’s not too late to read up on the scientific and ethical pot stirring created by CRISPR/Cas9. Check it out! Join us for our next Conversations in Seattle, Spokane and/or Portland, OR
SUGGESTED READINGS AND RESOURCES
REFLECTION ON "CRISIS IN ANTIBIOTIC RESISTANT BACTERIA: ARE YOU CHICKEN?" September 2015
Facilitator Dr. Doug Call, WSU Paul G. Allen School for Global Animal Health
During the autumn round of Community Conversations in Portland, OR and Seattle and Spokane, WA, we discussed the concern that ongoing antibiotic use in large-scale commercial chicken farms is producing antibiotic resistant (ABR) bacteria that contribute to more difficult-to-treat human diseases. In a 2014 report on antibiotic (ABX) resistance, the World Health Organization warns of humanity heading for a "post-antibiotic" era in which antibiotics can’t keep up with ABR and the diseases they cause.
Who are the stakeholders in this situation? Large- and small-scale farmers, consumers, researchers looking for new drugs that kill bacteria and medical professionals who want healthy patients. With all these stakeholders, how are we to address this potential public health crisis?
The One Health Initiative holds that human, animal and environmental health are all connected. ABX use practices in food animal agriculture are of particular interest, but not everyone agrees that there is sufficient evidence that the use of ABX in chickens (or other food animals) directly results in ABR infections in people.
Despite expected regional differences, participants in the Conversations were united in several areas. One, we simply need more data. The Food and Drug Administration only recently (2009) began collecting sales data for antimicrobials in food-producing animals. No one is sure what is actually being used. Legislation attempts to limit ABX use and require record-keeping both federally and in some states, including Oregon, have not garnered enough support. Two, consumer education needs are high. We are inundated with messaging and food labeling that is sometimes great marketing (rBST-free!—but there isn't a significant difference in the milk from cows treated or not with rBST) but low on information (how are egg-laying hens treated if they are cage free?). Many of us still believe that if we have a cold for more than 3 days we are good candidates for antibiotics. Three, the conversation tends to use rhetoric that is sensationalized and prevents authentic discussion. For example, “factory farms are overusing antibiotics and are mostly responsible for this crisis.” Toxic rhetoric.
Participants rallied around some practical action items. People committed to investigating the meaning of food labels. People committed to better hand washing and to touching their faces less often (did you know 30% of people carry MRSA in their nose?). Many also committed to sharing their new knowledge both professionally and personally.
All in all, this round of Community Conversations was high in energy and commitment to better living through smarter consumption of food, data and antibiotics. Many thanks to our facilitators Kathy Hessler, JD, LL.M and Emma Newton, MS (Portland); Heather Fowler, VMD, MPH and Paul Pottinger, MD (Seattle); and Doug Call, PhD (Spokane). Thank you to our Spokane Series Sponsor, Whitworth University.
The Community Conversation Series strives to strengthen the public’s trust in biomedical research and its ethical conduct. Through information sharing and in depth discussions with scientists and the lay public, we are speaking up to build the biomedical research community.