On Bioethics and Listening

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    Rev. Chad Baldanza listens as Dr. George Church addresses a meeting organized by the Minority Coalition for Precision Medicine.

Rev. Chad Baldanza listens as Dr. George Church addresses a meeting organized by the Minority Coalition for Precision Medicine.

In the last edition of CTK Stories, I shared how Chad Baldanza, assistant pastor at CTK Jamaica Plain/Roxbury, and I enjoyed the unexpected opportunity to discuss the idea that humanity is made in the image of God with geneticists and biotech industry executives at Harvard Medical School.  Incredibly, the story doesn’t end there:  it continues, with God graciously providing us with opportunities to listen, as well as to speak.

When we first considered the ethics of genetic technology, our concerns were fairly predictable.  Would humanity seize the opportunity for a new eugenics?  Would we cavalierly enhance ourselves or our children?  In the process, would we disregard the lives of the unborn? Would we threaten the dignity of those without access to such enhancements?  I shared NIH Director Francis Collins’ concern as to whether, as he writes, “the application of germline manipulation would change our view of the value of human life. If genomes are being altered to suit parents’ preferences, do children become more like commodities than precious gifts?”  These questions have fueled the debates of bioethicists for years, and the nightmares of science-fiction writers for generations - indeed, 2018 will mark the two-hundredth anniversary of Mary Shelley’s Frankenstein.  We’ve been worrying about this type of thing for a long time.

And so of course, if you pick a random book examining a Christian approach to bioethics off the shelf, you’ll see thorough analysis of these concerns.  But through our work with pgEd, Chad and I have been allowed to see a drastically different angle on these issues – one which encompasses not only dystopian and hypothetical concerns of what we might do in the future, but real and historical racial disparities that have characterized our society’s actual bioethical practices.  Much of the current bioethical literature describes the overt eugenics of late 19th and early 20th century America, but the ongoing legacy of inequity is barely on the radar.

Here is some of what we have learned.

At the forum where Chad made our presentation, the final speaker was Jeri Lacks, granddaughter of Henrietta Lacks, who died of cervical cancer in 1951 in a hospital at Johns Hopkins University.  Before she died, doctors took a sample of her cancerous tissue - without her knowledge or consent, and without informing her family. In the years since Henrietta’s death, researchers have worked with Henrietta’s cells, conventionally known as “HeLa cells,” to work for cures for polio, cancer, AIDS, and in countless other applications - but it was over twenty years before Henrietta’s family was even notified.  Jeri was there to speak to us that day about her grandmother and the ambivalent emotions she held within her - pride for the healing that had been accomplished, but a sense of violation that it had taken so long for the medical establishment to acknowledge its obligation to her family.  

Chad and I had been concerned that genetic editing might someday lead to a disregard for human dignity.  But here was an example of flagrant and ongoing dehumanization, and we had never heard of it.  

But it was not a new story to Michael Friend and Shakir Cannon.  Michael and Shakir were at the pgEd forum as the co-founders of the Minority Coalition for Precision Medicine (MCPM), a group that works to raise awareness within the African-American church of the benefits of precision medicine to address genetic maladies such as sickle-cell disease, which disproportionately affects African-Americans, including Shakir himself.  They also advocate for research into sickle-cell disease.  It’s an illness that is relatively well-understood, but research for a cure has not attracted the funding or attention devoted to other diseases.

Last September, Chad and I attended a meeting in Baltimore organized by Michael and Shakir and MCPM.  This meeting drew together local black pastors and many of the scientists that had attended the forum at Harvard.  We listened as they discussed ways of overcoming the overwhelming mistrust of the medical establishment among the African-American community.  

Dr. Tshaka Cunningham, a molecular biologist at the Department of Veterans Affairs and Howard University, noted that the benefits of precision medicine are limited for African-Americans because of their underrepresentation in genomic databases. But altering this situation would require African-Americans to volunteer to have their genomes sequenced. Rev. Earl Woodard, senior pastor at New David Baptist Church of Christ in Baltimore, pointed to a history that includes Henrietta Lacks’ story and the Tuskegee syphilis study. “When [my church’s members] hear the word genetics, genetics sounds like experimentation to determine inferiority,” he said. “The church has got to be able to build a bridge of trust between the medical community and the people in the pews.”  It’s just that bridge that Michael and Shakir are working to build, seeking partnerships with the NIH, pgEd, and leaders in the faith-based community.

Sitting in the meeting in Baltimore, I realized that I was hearing Christians expressing a set of concerns that barely register in the bioethical literature – and which had never really occurred to me.

One of the women attending the meeting told us her story of seeking treatment for her son’s chronic illness.  At one point she was asked by a nurse what drugs her son was using.  She thought the nurse was referring to prescription medication, but no:  the nurse, without consulting her son’s medical records, had assumed that he, a young black man, had a history of drug use.  Chad remarked to me what a privilege he and I enjoy, that we can take our children to a hospital and take for granted that the system was designed with them in mind, and that we can trust the care they’ll receive.

I’m grateful to have had the opportunity to hear the stories of brothers and sisters in Christ whose experience has been otherwise.  Christians have rightly emphasized the need to move cautiously with regard to genetic technology.  The Christians gathered in that room, though they shared those concerns, were more focused on the need to speed some things up, in order to see the benefits of precision medicine extended more widely.  

This isn’t to say that one set of concerns trumps another, or that listening to one another makes previously unthinkable questions easier to answer:  if anything, it makes them harder.  As Christians, we look to scripture for wisdom in thorny ethical questions, and we believe that it is fully sufficient to them.  The Bible does not provide easy, black-and-white answers to every question we would ask, but it always serves as a light to our path, whatever unexpected turns it may take.  Listening to people unlike ourselves is a crucial part of discerning the path that needs illumination.  It’s folly for us to try to guard against the dehumanization of future people if we cannot honor the Image of God in the people right in front of us by failing to hear them.  Christian engagement with bioethical concerns will fall sinfully short—because it will fail to ask the right questions—if the Church as a whole does not develop ways of listening more widely to one another’s stories and concerns.

Nathan Barczi is an associate pastor at Christ the King in Cambridge.  He and his wife Leann both moved from California to Boston in the early 2000s for graduate school.  They have three children.