The Civil Rights Movement and the Blood Supply

By Emily Largent

This year marks the 50th anniversary of the Civil Rights Act of 1964, and this semester, I have been fortunate enough to take a class on the Civil Rights Movement with Professor Randall Kennedy.  This has prompted me to examine the influence of race on healthcare delivery in the 1940s, ’50s, and ’60s.  Racism infected all aspects of the healthcare system, including medical schools and schools of nursing, residencies and post-graduate training, professional societies for doctors and nurses, ambulance services, outpatient clinics, staff privileges at hospitals, hospital admissions, and medical research.  Doubtlessly, the color line in medicine compounded physical ills with emotional and dignitary harms.

I find the stories related to the segregation of the American blood supply during World War II to be particularly interesting because they show that discrimination was a national (i.e., not just a Southern) problem, and there is a small connection to Harvard Law School.  Speak Now Against the Day: The Generation Before the Civil Rights Movement in the South by John Egerton has proven to be an excellent source of information on this topic.

Blacks made contributions to the war effort in many capacities.  William H. Hastie, a graduate of Harvard Law School, took leave from his position as Dean at Howard University School of Law (HUSL) to accept an appointment as civilian aide to Secretary of War Stimson.  Charles R. Drew, a physician who had conducted pioneering research on typing, preserving, and storing blood for later transfusion, helped both Britain and the United States establish blood programs to support military operations. In February 1941, Drew was made medical director of the American Red Cross blood bank program.

Late in 1941, the surgeons general of the United States Army and Navy informed the Red Cross that only blood from white donors would be accepted for military use.  Although it had been conclusively proven that there were no racial differences in blood, the military yielded to prevailing social bias and heavy political pressure.  In January 1942, the War Department revised its position, agreeing to accept blood from black donors, though also insisting on rigid adherence to segregation of the blood supply.  The Red Cross not only accepted that decision but declared that it had no interest in trying to settle racial-social controversies.  Later, Red Cross officials “suggested that those who persisted in criticizing the policy were unpatriotically attempting to cripple the blood donor service and thus harm the war effort itself.”  Continue reading

The Constitutional Implications of Ebola: Civil Liberties and Civil Rights In Times of Health Crises

Join us for an important public forum:

Constitutional Implications of Ebola:
Civil Liberties & Civil Rights In Times of Health Crises

This public forum addresses the constitutional and public health implications of Ebola response in the United States.  According to state and federal laws, patient information is deemed private and is to be held in strict confidentiality.  However, in the wake of Ebola, well-established protocols to guard patient privacy have been neglected or suspended without public debate.  At this forum, a panel of experts raise questions not only about how to contain the disease, but also to what extent Americans value their healthcare privacy, civil liberties, and civil rights.  To what extent are Americans’ Ebola fears influenced by the origins of the disease?  What liberties are Americans willing to sacrifice to calm their fears?  How to balance the concern for public welfare with legal and ethical privacy principles?

Speakers: Reverend Jesse L. Jackson, Sr.;  Michele Goodwin, Chancellor’s Chair, UC Irvine School of Law;  Professor Andrew Noymer, UC Irvine School of Public Health; and Dr. George Woods, American Psychiatric Association.

This Forum intervenes in the current national and international discourse on Ebola by probing law’s role in addressing public health crises.  This forum is free and open to the public.

WHEN: Wednesday, November 19, 2014, 3.30pm-5.30pm

WHERE: University of California Irvine, School of Law; ROOM EDU 1111, 401 E Peltason Dr, Irvine, CA 92612

Asian Americans as a Vulnerable Population

By Deborah Cho

I was excited to learn of an article in a recent issue of American Family Physician on the topic of caring for Asian American patients.  The contents of the article are worth a read (most of it is available here), but it generally states that medical providers should consider the Asian American health care culture in their care of Asian American patients.  That information is not new, but it does highlight important facets of the Asian American culture, such as the collectivistic approach within families to medical decisions and that many Asian American patients do not mention the use of supplements and herbals unless explicitly asked during medication review.  Though these tips were worth mentioning, the main reason this article caught my attention was because it was about a population that often seems overlooked in health care.

I think one reason that there appears to be little attention on the nuances of caring for Asian American patients is buried in this phrase: “despite the common perception that all Asians are well-educated, many Asian immigrants have low educational attainment and poor medical knowledge.” (emphasis added).  Perhaps we do not consider this population to be vulnerable or otherwise in need of particular concern.  As the author of the AFP article notes, however, this perception is possibly misguided (“30% of Vietnamese Americans 25 years or older have completed less than a high school education (compared with 11% in non-Hispanic whites)” and “A high percentage of Asian Americans have limited English proficiency”).  Continue reading

Ebola and Cognitive Bias

By Michele Goodwin

In the wake of another health care worker contracting Ebola, alarm bells are ringing. Last week, President Obama abruptly cancelled a campaign stop to Rhode Island to hold press conferences where he promised that federal authorities are “taking this very seriously at the highest levels of government.” Despite Obama’s assurances that the dangers associated with the disease spreading in the US are extremely low, other political camps are less convinced. Mitt Romney, the former Governor of Massachusetts, urged officials to close US borders to countries experiencing Ebola outbreaks, basically quarantining West Africa from travel to the United States.

In light of the hysteria surrounding Ebola and not Enterovirus, it’s worth thinking about our national response. Enterovirus has already claimed more lives in the US than Ebola. Think about this, the CDC warns that enteroviruses are highly contagious and already more than 500 patients have been diagnosed across 43 states in the past couple months. Yet, there has been no national outcry or demands to quarantine states, cities, local communities, or hospitals where patients were treated. Why?

Unlike the enterovirus, the face of Ebola is decidedly immigrant or “outsider.” It’s origins are Africa.  Could these factors have contributed to Thomas Eric Duncan’s initial treatment at a Texas hospital and the inaccurate media accounts shortly following his diagnosis? Studies show how cognitive or implicit biases may have much to do with how we treat patients.  Continue reading

Dov Fox on Racial Sorting in Family Formation

Check out Dov Fox‘s new op-ed on racial sorting in family formation over at Huffington Post: Reproducing Race.

The piece was prompted by this week’s news of the white lesbian mother who sued a sperm bank for mixing up the sample she ordered with that from a black donor. The impulse to call one’s mixed-race child a “wrongful birth” gives reason, Dov argues, to rethink the racial preferences that we tend to accept without question; race-matching should be resisted for expressing the divisive notion that single-race families should be preferred to multiracial ones and that families should be set apart by race.

Genetic Mugshots

By Dov Fox

New technologies can put pressure on the logic of the law. Consider the well-settled legal conclusion that equal protection rights don’t apply when police use race-based descriptions to look for suspects. An emerging forensic technique called DNA phenotyping makes it hard to defend this reliance on racial proxies–rather than appearance itself–in the investigation of crime.

Phenotyping promises to use a piece of hair or skin left at a crime scene to infer an unknown person’s physical characteristics like eye color, nose shape, and cheekbone width. A groundbreaking new study — featured in last week’s NatureNew Scientist, and Time Magazine — used high-resolution 3D images and facial recognition software to approximate the facial features of almost 600 people of mixed ancestry from their DNA.

I consider the scientific, constitutional, and criminological implications of this technology in The Second Generation of Racial Profiling. I argue that reliable DNA phenotyping would force us to rethink whether race-based suspect descriptions are the kind of racially classifying state action subject to strict scrutiny–and it would lean on the narrow tailoring requirement that the state use race-neutral alternatives when possible. I summarized my replies to the best policy objections in a short piece on The Future of Genetic Privacy:

Critics of the forensic technique argue that its adoption would imperil individual privacy and facilitate racial profiling. These objections are important, but they’re overstated. What “a person knowingly exposes to the public,” the Supreme Court has held, “is not a subject of Fourth Amendment protection” against unreasonable searches and seizures. And statutory safeguards could be afforded for sensitive external traits about whether a suspect has changed genders, for example, or had plastic surgery.

Racial profiling is another concern. That the technology could be used to target minorities at disproportionate rates, however, gives no reason to think that such misuse is probable or any more likely than DNA dragnets or stop-and-question sweeps based on race-based suspect descriptions. The adoption of more precise physical markers in place of notoriously unreliable eyewitness observation would improve arrest accuracy and enhance police legitimacy.

The more serious worry is that DNA phenotyping might resurrect discredited conceptions of racial biology. If the [National Institute of Justice-funded] technology works as well as the government is banking it will, however, then replacing race-based suspect designations with the colors and shapes of facial features could, to the contrary, loosen the hold that race has on the way that people think about crime. Today’s all-points-bulletin for a “black man” could give way to tomorrow’s search for a suspect with dimples, copper complexion, and green eyes.

Wouldn’t police just filter these markers into racial terms? Maybe not, if they’re trained like clerks at a makeup counter are to trade in racial identifiers for face shapes and color tones. Besides, measures short of prohibition would likely soften whatever risk the adoption of DNA phenotyping would pose to egalitarian norms — for example, requiring higher burdens for investigatory use, or racial impact assessments of the kind that gained national prominence after the Supreme Court struck down a key provision of the Voting Rights Act.

(Taboo) Science, Policy & the Importance of Good Science Communication: Redux

By Michelle Meyer

In late May, I wrote the following:

Yesterday, the Social Science Genetic Association Consortium, an international consortium that pools and conducts social science research on existing genome-wide association study (GWAS) data, and on whose Advisory Board I sit, published (online ahead of print) the results of its first study in Science. That paper — “GWAS of 126,559 Individuals Identifies Genetic Variants Associated with Educational Attainment” — like much human genetics research, has the potential to be misinterpreted in the lay, policy, and even science worlds. That’s why, in addition to taking care to accurately describe the results in the paper itself, including announcing the small effect sizes of the replicated SNPs in the abstract, being willing to talk to the media (many scientists are not), and engaging in increasingly important “post-publication peer review” conversations on Twitter (yes, really) and elsewhere — we put together this FAQ of what the study does — and, just as important, does not — show. So far, our efforts have been rewarded with responsible journalism that helps keep the study’s limits in the foreground.

I had no role in the GWAS itself; that credit goes to SSGAC’s extraordinarily meticulous scientists. I did, however, have a strong hand in the FAQs. And so I am really pleased that in a new editorial, the editors of Nature (not for nothing, Science’s main competitor) highlighted our FAQ as an example of best practices in behavioral genetics research and science communication. They write:

For clarity, scientists would do well to follow the example of the Social Science Genetic Association Consortium. In June, this group published a paper on genetic variants associated with educational attainment (C. A. Rietveld et al. Science 340, 1467–1471; 2013). Accompanying this was a nine-page Frequently Asked Questions document that, in plain, easy-to-understand language, addressed such questions as why the researchers did the study, what they found and what the implications of the work are — and are not (see go.nature.com/7mov2j). The document spelled out that the consortium had not found ‘the gene’ for educational attainment, that each genetic marker found has only a very small effect on length of schooling, and that any policy response based on that single study would be premature.

Scientists cannot be held responsible every time someone misinterprets their work. But simple steps such as these could help to prevent and address some of the potential distortions of behavioural genetics — and could help to ensure that society continues to support the work.

For more on taboo science—including IQ, race, violence, and sexuality—see Erika Check Hayden’s accompanying article, which discusses our Science GWAS in the IQ category and (elsewhere in the article) quotes Duke lawprof (and new Conspirator!) Nita Farahany and Bill of Health guest contributor Yaniv Erlich. Now if we could only get popularizers of science to understand that their lay audience will rarely know that they are “oversimplifying” that science.

[Cross-posted at The Faculty Lounge]

“Patient Discrimination against Medical Personnel” event featured in Harvard Crimson

Harvard’s student newspaper, the Harvard Crimson, covered last week’s Petrie-Flom event on “Patient Discrimination against Medical Personnel” featuring Kimani Paul-Emile of Fordham Law School. You can read the full article here.

Video of the full event is also available online.

Video of “Patient Discrimination against Medical Personnel” Now Available

If you weren’t able to join us for the panel discussion of “Patient Discrimination against Medical Personnel” on September 17, 2013, featuring Kimani Paul-Emile (Fordham Law), Renee Landers (Suffolk Law), and Fidencio Saldana (Harvard Medical School), you can watch it online here.

9/16 Workshop: Kimani Paul-Emile on Race, Ex-Offender Status, and Employment Discrimination

On Monday, September 16, the Petrie-Flom Center’s Health Law Policy and Bioethics Workshop will host Kimani Paul-Emile of the Fordham University School of Law. Paul-Emile’s presentation is titled “Beyond Title VII: Rethinking Race, Ex-offender Status And Employment Discrimination In The Information Age.”

All meetings of the Workshop are free and open to the public. You can download Paul-Emile’s paper and view the full schedule of upcoming workshops here.

Dov Fox on the Future of Genetic Privacy

Bill of Health contributor Dov Fox has a new op-ed at the Huffington Post on “junk” DNA and the future of genetic privacy in the aftermath of the Supreme Court’s ruling, in Maryland v. King, that police may collect DNA from people under arrest. Fox argues,

The next great controversy over forensic DNA won’t have anything to do with whether police can test “junk” DNA from people whose identity they already know. It will be about whether police can look “more broadly” at the “other stuff” that genetic information can reveal from people who aren’t yet known to them. That our DNA could serve as an eyewitness has powerful implications, beyond individual privacy, for the pervasive role of race in the investigation of crime.

Read the full piece here.

Racism in Transplant Denial? Or Too Few Hearts To Go Around?

By Michele Goodwin

Anthony Stokes, a fifteen year old kid from Decatur County, Georgia, is expected to die in a matter of months, according to his doctors at the Children’s Healthcare of Atlanta.  Maybe, they say, he will live for six months.  Who knows?  Anthony suffers from an enlarged, increasingly less functional heart.  His condition is not unusual, and a reasonably effective cure is at hand: a heart transplant. (Learn more about Anthony’s story here.)

However, Anthony has become the latest victim of a dysfunctional U.S. transplantation system, which tempts Americans with a transplant waiting list, but kicks them off if they become too sick or too old.  The problem is that there are too few organs to meet demand, and this perennial problem receives far too little attention from Congress.  Indeed, the U.S. transplantation list, coordinated by the United Network for Organ Sharing, UNOS, (a private organization that coordinates significant aspects of the U.S. transplant system) is so overcrowded that patients increasingly turn to black markets in India, China, Pakistan, South Africa, and other countries if they hope to survive.  (Learn more about that here.) Congressional hearings document Chinese prisoners dying and shortly thereafter Americans receiving organs.

Anthony’s family and some local organizations claim that racism is behind doctors refusing to place the boy on the transplant list.  Anthony is African American.  They ask, what is the harm in letting him on the list?

Continue reading