intersections

I’m sorry about the delay– my second post about Medtronic and local investigators will be up soon.

This week I’ve been distracted from this blog (and from the topics it covers, even in my own private thoughts) by two very important pieces of U.S. news.  While not directly related to public health or research, both are urgent matters of human dignity and for that reason I think they’re actually closely related to this blog’s mission.

First: on Tuesday, the U.S. Supreme Court voted that the Indian Child Welfare Act does not prevent non-custodial parents from having their parental rights terminated, and remanded the adoption case at the center of Adoptive Couple v. Baby Girl back to the South Carolina courts.  Justices’ questions during arguments focused on the race of the child and her father, Dusten Brown, despite the fact that the Cherokee Nation is entitled to set its own requirements for enrollment.  The Cherokee Nation determines its membership by descent from a person named in the Dawes Rolls– not by blood quantum– and not only do Dusten Brown and his daughter qualify, but the Court has no standing to object.

More importantly, the ICWA was passed to prevent exactly the situation at hand: the removal of Native American children from their homes and their subsequent placement with white families and assimilation out of their language and culture.  Despite the ICWA, Native American children are removed from their homes in numbers far disproportionate to their population, and overwhelmingly placed with white families.  Not only do these children lose the opportunity to be raised by their families and in their own communities, to learn their language and culture; they may also lose access to precious information about their backgrounds that could help them enroll in their nations as adults.  In South Dakota, illegal state-sanctioned removal of Native American children– essentially kidnapping– is so widespread and culturally destructive that the Lakota Nation has complained to the U.N. that the practice constitutes genocide.

The removal of a Cherokee child to be raised by a white couple, when members of her immediate and extended family and her Nation are able to raise her, is precisely what the ICWA is intended to prevent.  The harm caused by this practice extends far beyond a single child and her family to endanger communities, Nations, and cultures.  And it does that harm regardless of whether a particular parent has or does not have custody.  You can read more about the background of this case at Indian Country Today Media Network, and can give general legal support to tribes through the Native American Rights FundThe Lakota People’s Law Project works specifically to strengthen and enforce ICWA, and to effect the return of over 2200 Lakota, Nakota, and Dakota children who have been taken from their homes illegally.

Second: As most people probably know by now, a key section of the Voting Rights Act was ruled unconstitutional despite extensive evidence cited by Congress in 2006 that its formula for requiring preclearance is still needed.  While other protections of the Voting Rights Act are still in place, the section requiring that jurisdictions with a history of racial discrimination obtain preclearance before putting election changes into effect was an important protection for voters at risk of disenfranchisement.  Several states have already stated that they will put into effect discriminatory laws such as ID requirements that would once have required (and probably not obtained) preclearance.  In many such jurisdictions, the civil rights of racial and language minorities, particularly African Americans, are gravely at risk.

This decision is itself unconstitutional: the Fourteenth and Fifteenth Amendments allow Congress to do exactly what it has done with the Voting Rights Act until now.  It is also, of course, immoral and racist.  But it is also– and this is what I will be telling the volunteers answering phones for my elected representatives– unpatriotic and a dishonor to the memory of some of America’s greatest heroes.  Racial slavery and the political systems related to it, including Jim Crow, are modern atrocities that stand out, not only in American history, but in human history.  The moral vision and courage of abolitionists and civil rights activists was and is awe-inspiring, and our racist society heaps shame upon shame when we fail to acknowledge this– as Tuesday’s decision did.  The products of their work, including the Voting Rights Act, are among our most precious gifts as Americans and as human beings.  We simply cannot let them go.

To that end, Free to Vote is a campaign to add an affirmative right to vote to the Constitution and establish minimum standards nationwide to protect access to the vote for all citizens.  You can also sign on to support Restore Voting Rights, the campaign to update the Voting Rights act and allow it to function again with a new formula to require preclearance.  Of course, you can and should call your elected representatives and let them know how important voting rights are to you.

While I find public health and research ethics interesting for their own sake, the moral vision of this blog is that, as professionals, we should commit to using our incredible privileges for the betterment of society at every possible place where our activities intersect with other human beings.  If you share my opinion, there is no need to sit impotently in sadness and frustration about the state of our democracy.  Together, we can use our gifts to do what’s right.

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medtronic and open science in ethical perspective

Carken WPA SafetyVia Karan Chhabra at Project Millenial, two meta-analyses have been published in the Annals of Medicine reviewing patient-level data from Medtronics’ clinical trials of recombinant human bone morphogenetic protein-2 (rhBMP-2).  This is a drug intended to be used after spinal surgery to promote bone regrowth, but, as Karan describes, the available research on its efficacy over pelvic bone autograft is contentious.  The studies are significant because they use the exact same patient-level data and reach conclusions that are similar– but not exactly the same.  The investigators were able to do this through the cooperation of Medtronic and the Yale University Open Data Access (YODA) project, whose purpose is to make this type of data more widely available to researchers– especially independent researchers.  The two meta-analyses, and four accompanying editorials on the project, can be found in the Annals’ current issue.  The relevant articles are all currently free.

In “herald[ing] a historic moment in the emerging era of open science”, the editorial by Krumholz et al. brings up several important ethical issues suggested by the conduction of open science.  Wider availability of clinical research data, especially industry sponsored research, is a public and scientific good to be celebrated.  But I found myself wondering how we can make sure that we don’t carry forward other practices of our current (and in my opinion, broken) research culture.  This post deals with some of those questions at the broad level of our culture and our engagement with society.

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when research carries a benefit

It can be great to recruit for research studies that may benefit their subjects, and I’m involved in several right now. I suspect that this is because “children are not just little adults” and many medical advances that have been proven in older people need to be re-tested in children to make sure that they are still beneficial and safe.

Many families of medically complex children are humbling in their altruism, and in their combination of trust in their medical caregivers (and by extension me) and advocacy for their children.  I often meet families who agree immediately to the study I’m asking them about– “anything to help”– and continue saying yes while I go through the minimum information they need to sign.  When you add a potential benefit to their child, talking about the study is easy and a great platform to make sure they understand the whole procedure.

The flip side of clinically beneficial research, though, is that your presence can be needed urgently.  It’s a privilege to talk to families when they are upset about an unexpected admission or procedure for their child and really just need to go get a cup of coffee.  Even though I can’t answer questions about whether a particular doctor is available or when a certain test will be ready, I hope it’s helpful that I’m not in a hurry (I’m just there to see them, and I’m going back to my office when we’re done), I have some general information about the hospital and the procedure, and my job is to approach them with the attitude that it’s OK to say no to me.  With some families, I can tell that that is comforting, at least for a little bit.

But, perhaps because the research relationship is what you make of it, it’s hard to feel satisfied in a job well done after these conversations.  I always come away feeling that, as much as I educated the family, I could have somehow super-educated them and solved their problem.  That’s impossible, of course: their child is sick.  The work to change that always feels painfully slow.  But I hope families can come away with the knowledge that, by agreeing to talk with me, they’ve done one more thing to help.

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doing empathy

Like a stereotypical researcher, I don’t always intuitively “get” people.  I need to think through what they’ll want, often using analogies and for a long time, before I’m ready to talk to them.

Or I could just become an expert on asking people to do one thing, and think it through professionally.  Because I have to think it through and write about it first, educating people on my studies (and sometimes the clinical procedures they’re based on) depends on a process I think of as “doing empathy”.

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ethics in publication, ethics in experimentation

Weisberg WPA ScienceResearchers and medical professionals have numerous ethical codes governing, or at least guiding our work.  Some, like the Hippocratic Oath and human research subject protections are widely known, while other areas of our ethical practice may be determined by our employers or recommended by professional societies– sometimes with little clear data about whether these codes reflect our practice or only an ideal.

Ethical treatment of study workers– particularly around the issue of authorship– is an example of the latter area.  Every young researcher I know has run into problems being fairly acknowledged or given authorship for their work.  And while authorship disputes are widespread enough to merit guidelines from the ICMJE, WAME, and the Committee on Publication Ethics (PDF), “local customs and practice” [COPE] reinforce unethical and exploitative approaches to research work.  This is surprising because publication ethics, far from being merely guidelines in how to mentor young researcher or avoid CV padding, reflect some of the same behavioral imperatives that should guide us as we attempt to protect our subjects and benefit the public.

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welcome!

I’m one person thinking through social justice, medical ethics, and public health, in public, on this site.

I am a research minion and, from my spot on the ladder, it can be taken for granted that my opinions do not reflect those of my lovely employer.

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