Book review: “Inside the O’Briens”

Lisa Genova is a novelist I would love to meet. She is a Harvard-trained neuroscientist, but she probably doesn’t spend much time in the lab these days. In   2007 she wrote Still Alice, which became a best seller and, as they say, a major motion picture. Still Alice portrayed a vibrant, brilliant professional woman facing early onset Alzheimer’s. She tries to make the most of the good years still left to her, while planning for her suicide when her dementia overtakes her.

Genova found a terrific niche. Americans are fascinated by the brain, how it works and how things go awry (cf. our current obsessions with Alzheimer’s and autism). Her next book, Left Neglected, depicted another woman, a hard driving executive who survives a car crash with her body and her intellect intact, but unable to connect to anything on the left side of her body. Her left field of vision, hearing, movement, smell, were all gone.   Almost more interesting than the neurological phenomenon is the story of how a woman who is her family’s main breadwinner negotiates her responsibilities in this new world. Love Anthony is the rather too sentimental story of a boy with autism, told variously from the perspective of Anthony and of his mother.

I just read Inside the O’Briens, published last year. I found it the most gripping of Genova’s novels. Joe O’Brien is an Irish cop in South Boston, the kind of guy that you want to describe as “salt of the earth.” He loves his job, his wife Rosie, and his four grown kids. But sometime in Joe’s forties, some odd things begin to happen: weird rages, an inexplicable fall, trouble concentrating.   Eventually Joe and his family are navigating the scary and challenging world of Huntington Disease. HD is a dominant genetic disorder, meaning that if even one parent has the disease, each child has a 50/50 chance of getting it. It is 100% penetrant: if you have the gene, you will certainly get the disease (if you don’t get hit by a truck first). The condition is marked by increasing neurological dysfunction, until you cannot move, eat, or speak, although you remain conscious and aware. Inside the O’Briens is a clever title that signals the double-barreled scope of the novel. On the one hand, the HD gene is “inside” Joe, and potentially inside each of his children, and an unborn grandchild. On the other hand, the story gets “inside” the close-knit family, and depicts how the O’Briens, individually and together, cope with Joe’s condition, with the social and economic implications of his early retirement, and with the real possibility that each of them could have the disease. Each of the kids has to grapple with the question of whether to get tested, and the oldest son and his wife must also decide whether to test their newborn baby.

This is a great beach or airplane book—a compulsive page turner that also leaves you with the feeling that you’ve entered someone else’s world and learned a lot.


Punish women for having abortions?

Donald Trump got into a lot of trouble yesterday for saying that abortions should be illegal and that women (as well as abortion providers) should be punished for having them.  It was a field day for Democrats, of course, but the pro-life forces were equally dismayed, and Republicans hastened to perform damage control, not wanting to be seen as “waging war on women.”

So maybe I’m alone in finding his perspective a little refreshing?  Trump, of course, quickly backtracked to say that women were “victims” of abortion and should not be punished.  March for Life reiterated its position that women often had abortions out of desperation and “deeply regretted” the act later.  Another pro-life group said that women needed to “heal,” not be punished.

By saying that laws should punish women as well as providers, Trump was at least giving women the respect of acknowledging that they were not poor vacillating victims, but responsible deciders who stood by their actions.  The “victimhood” road is a very dangerous path.  This is the road Justice Kennedy took when he frustrated and disappointed prochoice women by upholding a ban on so-called “partial birth abortion,” noting that “it seems unexceptional to conclude some women come to regret their choice to abort the infant life they once created and sustained.”  That kind of patronizing condescension does no good for women’s causes.

Wheaton College

I guess this is the “other stuff,” in Bioethics and Other Stuff.  I am copying below my essay that was published today on the website of the American Academy of Religion, as part of Religious Studies News.

Wheaton College, Larycia Hawkins, and Our Academic Life Together

The case of Larycia Hawkins has brought much gnashing of teeth in many areas of academe. Hawkins, a tenured professor of political science at Wheaton College, a Christian liberal arts college, was placed on administrative leave with a recommendation for the initiation of termination proceedings. On February 9, 2016 Hawkins and Wheaton agreed to part ways, with the settlement terms remaining private. According to the College, Professor Hawkins was in trouble for her public declaration (outside the classroom) that Christians and Muslims worship the same god. Some commentators suspect that Wheaton was using the theological issue as a pretext for firing someone who is female and African-American, on a mostly white campus, or that she was really under attack for her act of wearing the hijab as a statement of solidarity with Muslim women. But I am going to take Wheaton at its word here, the better to explore some of the academic implications.

Wheaton can perhaps be faulted for a lack of clarity in the lines it draws. But in general, Wheaton and similar colleges go out of their way to make clear to students and faculty what the expectations are for belief and behavior, and what the consequences can be for crossing those lines. (It is also possible that Hawkins and Wheaton are engaged in a genuine hermeneutical debate about aspects of evangelical doctrine, a debate in which I am not qualified to engage.)   Although I cannot imagine teaching in such a college or sending a child of mine there, I acknowledge that as long as Wheaton is clear and upfront about its requirements, it has the right to enter into a contractual agreement with faculty in which they give up certain areas of academic freedom as a condition of employment. As Wheaton says on its website, “members of [the] faculty, who have voluntarily signed our Statement of Faith and the Community Covenant, commit to accept and model these foundational documents with integrity, compassion and theological clarity inside and outside of the classroom.” For clarity, I am going to call these institutions “faith-circumscribed.”

Although Hawkins is a political scientist, she works on questions of religion, and while we have never met, I think of her as a colleague. I received my doctorate in religion and currently teach in a religion studies department.   Professor Hawkins’s case rekindles for me a concern I have had since graduate school, a concern for which there is no comfortable forum.

From the time I was a graduate student at the University of Iowa, I have been a member of the American Academy of Religion.   I served for two terms on the Board, and was a co-chair of the Church/State Studies Group. Some scholars participating in AAR and its sister society, the Society for Biblical Literature (SBL), come from colleges such as Wheaton, which have faith-based requirements for hiring and retention. The same is true in other organizations, such as the American Historical Association, the American Society for Church History, the Law and Society Association, and others. Our annual meetings are in many ways the backbone of the disciplines; they are where we try out new ideas, network with other scholars, and build scholarly fellowship with people outside our subdisciplines.

At its conferences, AAR and SBL have panels on every conceivable topic, many of which—gay rights, reproductive ethics, ecumenical relations, the historicity of the Bible, and so on—are guaranteed to run afoul of some institution’s Statement of Faith. My problem is this: when a panel includes scholars from faith-circumscribed institutions, are we all playing by the same academic rules? When I give a paper, I am giving it my best shot at that moment. It may be wrongheaded or just plain stupid, and I may change my mind tomorrow—perhaps in response to a persuasive argument from some other scholar on the panel–but at that moment, it is sincerely my best scholarly understanding of the question.

The same cannot necessarily be said for faculty at faith-circumscribed institutions. My concern is not that the scholar’s faith leads her to certain conclusions; that’s what we want, and that’s true for all of us, religious or secular.   My concern is that the scholar may be led to conclusions that she is not free to voice publicly, for fear of dismissal.   Imagine a panel discussion on, “Do Jews, Christians, and Muslims Worship the Same God?” a timely topic in view of Pope Francis’s recent remarks on the subject.   Someone who teaches at Wheaton, who is driven by her scholarly investigation to decide that the answer is Yes, must either withdraw from the panel or be less than forthright in her presentation.

So if some, but not all, of us are “giving it our best shot,” on panels and journal articles and symposia, what does that say about our academic life together? Are we truly involved in the same enterprise? I don’t see how that can be the case. And if we are not involved in the same enterprise, what consequences follow from that? If I invest time and money to read a scholarly book, should I avoid those written by scholars from faith-circumscribed schools, because I cannot trust the sincerity of their conclusions? If I am putting together a panel, should I invite scholars from faith-circumscribed schools, knowing that they come with one hand tied behind their backs?

To sum up, I have no idea if Hawkins is right, from an evangelical perspective, that Christian and Muslims worship the same god. And I accept that Wheaton was within its rights to fire Hawkins. But, that forces me to the conclusion that Wheaton and similar schools are not engaged in the same academic enterprise as noncircumscribed schools. The AAR’s mission statement includes the following: Within a context of free inquiry and critical examination, the Academy welcomes all disciplined reflection on religion—both from within and outside of communities of belief and practice—and seeks to enhance its broad public understanding. What can it mean for “free inquiry” if some of us are not free to inquire?

I had to laugh…

I had to laugh. A recent article in Annals of Internal Medicine describes an experiment to determine the “safety and behavioral effect” of disclosing to subjects the pleiotropic effect of the APOE genotype. Pleiotropy describes genes that have more than one effect.  In this case, having the APOE4 version of the gene heightens one’s risk of Alzheimer’s Disease, and also of coronary disease. The researchers concluded that participants could, indeed, handle the information that their genotype also conferred an increased risk of cardiac disease.  I was laughing because, not too long ago, the shoe was on the other foot. In the late 1990s, the pleiotropic nature of APOE4 was a favorite dilemma for bioethicists, for the opposite reason. Most people assumed that it was beneficial to tell people of their increased cardiac risk, given available medication and lifestyle changes, but as Robert Wachbroit wrote, it was ‘medically useless and socially harmful’ to reveal an increased risk for AD. It’s interesting that the perception has flipped, given that we still have no effective interventions for Alzheimer’s Disease.

The FDA lifts ban on gay men donating blood–or does it?

The FDA announced today that it was ending a decades-long ban on gay men as blood donors.  This was greeted with huzzahs, as it appeared to lift an irrational and stigmatizing ban.  However, a gay man who wishes to donate must have been celibate within the last year, EVEN WITHIN MARRIAGE.  What gives here?  Are gay married men believed to be less likely to remain monogamous than hetero married men?  Is this evidence based? Am I missing something?

Should we require HPV vaccine for school attendance?

As followers of this blog know, I hugely respect Aaron E Carroll, MD, who writes The Incidental Economist blog, and often writes for the NYT’s “Upshot” as well.  In the 11-9-15 “Upshot,” he talks about the disappointing uptake of the HPV vaccine (the one that protects against sexually transmitted herpes virus, which can cause cancer of the cervix, throat and tongue , penis, etc.).  He blames his fellow docs for not offering the vaccine to parents in the same matter-of-fact way they recommend the standard childhood vaccines.  But he also faults “policy,” lamenting that only two states, plus D.C., require HPV vaccination for school attendance, noting that almost all states require other vaccinations, e.g. chickenpox.

Carroll makes an important mistake here.  Diseases like mumps, measles, and chickenpox are transmitted at school, through the usual methods of contagion, in the classroom, cafeteria, and playground.  To keep the entire school population safe, all (or almost all) children must be vaccinated.  It’s not right to require parents to send their kids to school, and then not keep them as safe as possible while they are there.  However, the HPV virus is transmitted sexually, and unless schools have changed a lot since I was a  kid, that’s not activity that normally takes place in school.   Requiring HPV vaccine (or Hep B vaccine) for school attendance is simply using school as a convenient but arbitrary gatekeeper.  That’s a bad idea for a number of reasons.  For one, school attendance is a good in itself, and we shouldn’t be throwing up unnecessary roadblocks.  For another, we shouldn’t get in the habit of using school as a stick and carrot for all sorts of childhood policy goals.  Better to have as many kids in school as possible, and then use the school to further health education, including the benefits of the HPV vaccine.