It’s not every day that research ethics makes it way to the front pages of the newspapers. Usually those issues are addressed in other, less prominent venues. But last week’s New York Times article by Alan Schwarz, Walt Bogdanich, and Jacqueline Williams, “N.F.L.’s Flawed Concussion Research and Ties to the Tobacco Industry,” continued the controversial concussion discussion by reporting that the multi-billion dollar league omitted “more than 100 diagnosed concussions . . . including some severe injuries to stars like quarterbacks Steve Young and Troy Aikman.” One critic formerly associated with the league is quoted as saying: “You’re not doing science here; you are putting forth some idea that you already have.” The N.F.L. concussion issue was brought to public attention through PBS’ Frontline and more recently through the movie, Concussion.
The Times article notes the disagreement between what the league says now (“clubs were not required to submit their data and not every club did”) and what the league said at the time of its earlier studies: “It was understood that any player with a recognized symptom of head injury, no matter how minor, should be included in the study.” It calls into question what the league knew, when it knew it, and how that impacted the well-being of its players. Just a few weeks ago, the New York Times also published “The N.F.L.’s Tragic C.T.E. Roll Call,” a list of the some of the most notable cases of deceased players who were found to have C.T. E.
As a lifelong N.F.L. fan, I hope that league would do its part to ensure the safety of its players, whether symptoms occur during or after their playing days. As someone interested in bioethics in general, I hope that researchers would continue to use the best practices available to ensure that their data collection and results are unbiased. This is our responsibility to future generations.
My work as a hospital chaplain has brought me to the bedsides of many hurting people from all walks of life. My belief that people are created in the image of God informs my approach and enables me to offer spiritual support to them. As you might guess, sometimes hospital interactions are light-hearted; at other times they are much more serious.
Recently I attended two seminars designed to help medical professionals think through the importance of having “the conversation” with patients and their families. The conversation, of course, is about end-of-life issues. It was pointed out that when speaking to patients, medical personnel often move straight from diagnosis to treatment options, without allotting time to gauge reaction. By moving quickly to treatment options, difficult and uncomfortable questions are avoided. Ultimately, this is neither efficient nor helpful. People who are not allowed the opportunity to discuss their condition will be more likely to misunderstand their treatment options and possible outcomes.
If we are to treat people with the respect they deserve, we must take time to listen to them. This has been my experience has a hospital chaplain. There have been occasions when some active, engaged listening has produced amazing and profound statements such as “I can’t die now because I want to take care of my children” or “I have lived a good life and am ready to die” or any number of other things. Each reflects the patient’s values and ultimately helps the medical team address concerns much more effectively.
We all know the grim truth: we will all die one day, but seem horribly unwilling to talk about it. Valuing human beings as human beings needs to be a central tenet of our ethical approach. Christians might call this the ethic of love. I believe it makes good ethical sense.
The recent appearance of the Zika virus has justly concerned many. With scientists evaluating its relationship to microcephaly in newborns, important ethical issues arise. The Washington Post notes that the CDC has reported that in the United States two recently Zika infected women had abortions, two suffered miscarriages, two delivered healthy babies, another gave birth to a baby with serious birth effects, and two are still pregnant.
The ethical issue of Zika and abortion is raised in a recent op-ed in the Los Angeles Times. Professor Charles Camosy notes that the U.N. High Commission for Human Rights is pressuring Central and South American countries “to change laws that protect prenatal children from violence” even though the WHO has cautioned, “[N]o scientific evidence to date confirms a link between Zika virus and microcephaly.”
Camosy’s point is well worth considering. He challenges the attempts of organizations to “impose foreign moral and legal principles onto those who think differently” and wonders why there has been so little American reaction to this “neocolonialism.” His observation is chilling. Citing Indiana’s infamous compulsory sterilization law of 1909, he notes, “It may be that the eugenic impulse is so deeply embedded in U.S. culture that we don’t even recognize it.”
Undoubtedly, the Zika virus is scary, especially for pregnant women. But I wonder along with Camosy, why the first response by some is to discard the “most vulnerable among us.” Surely, there must be other ways help to those in need.
On this Presidents Day, the United States finds itself in the midst of a heated presidential campaign. Both major parties are holding state-by-state elections to identify who will be the candidates for the November election. There are lots of issues being discussed—taxes, national security, immigration, etc.—sometimes at a dizzying and confusing pace. One issue noticeably absent from the discussion: bioethics. Outside the predictable back and forth over abortion, not much mention has been made of bioethical issues. However, in a February 3 CNN Democratic Town Hall, a voter who identified himself as suffering from cancer asked Hillary Clinton an important bioethical question: “. . . I wonder what leadership you could offer within an executive role that might help advance the respectful conversation that is needed around this personal choice that people may make, as we age and deal with health issues or be the caregivers of those people, to help enhance and — their end of life with dignity” (http://www.cnn.com/2016/02/03/politics/democratic-town-hall-transcript/).
After thanking the questioner, Mrs. Clinton responded, “And I have to tell you, this is the first time I’ve been asked that question . . . [W]e need to have a conversation in our country.” I agree. Wouldn’t it be good to know where the candidates stand on this and other bioethical issues, or at least be able to describe how they would approach it? Unfortunately bioethical topics do not lend themselves to brief, canned responses or to 30-second attack ads. Yet physician assisted death will continue to be part of our bioethical discussion for the foreseeable future. I am glad Mrs. Clinton was asked this question. We can only hope that the other presidential candidates will face similar inquiries.
Two weeks ago, I had the opportunity to travel to Havana, Cuba and speak with people interested in the topic of bioethics. Los Pinos Nuevos, a Protestant denomination with over 400 churches throughout the country, invited my wife and me to participate in discussions on bioethics over three days with up to twenty people involved in the educational activities of the denomination. I have been a hospital chaplain for the past seven years and have participated in bioethics from that perspective—usually in the role of supporting patients and families during very difficult times. I was very interested to hear a different culture’s perspective on these crucial matters.
This was my first time in Cuba and so I didn’t know what to expect. I tried very hard to avoid the image of the ugly American telling another culture, “Our way is the best way.” The images of Havana and its people are still in my mind—a city and people both vibrant and colorful. What I found was a group of very bright people, educated and professional, and very engaged in the topic of bioethics. Their questions reflected our shared humanity—questions about suffering and pain, issues related to the beginning of life as well as to the end of life.
Because this was only an introductory visit, I gave no formal lectures. However, with a big assist from my wife Elizabeth and her translation ability, I was able to share some important information on the image of God from John Kilner’s, Dignity and Destiny: Humanity in the Image of God. It stimulated a great deal of discussion and was very well received. For the believer, understanding that someone has the image of God influences the way we provide treatment. It gives us the opportunity not only to treat their body, but also to provide support to their spirit.
We look forward to the opportunity to return to Cuba in the not too distant future. For me, the conversation has just begun.