Federal Newborn Screening Law Emphasizes Informed Consent

By Allison M. Whelan (Guest Blogger)

On December 18, 2014, President Obama signed into law the Newborn Screening Saves Lives Reauthorization Act of 2014. The Act includes new timeliness and tracking measures to ensure newborn babies with deadly yet treatable disorders are diagnosed quickly. These changes responded to a Milwaukee Journal Sentinel investigation that found thousands of hospitals delayed sending babies’ blood samples to state labs.  A primary purpose of newborn screening is to detect disorders quickly, so any delays increase the risk of illness, disability, and even death.

Although a major reason for the Act’s amendments is to address these problematic delays, another important addition to the Act establishes a parental consent requirement before residual newborn blood spots (NBS) are used in federally-funded research. The Act directs the Department of Health and Human Services (HHS) to update the Federal Policy for the Protection of Human Subjects (the “Common Rule”) to recognize federally-funded research on NBS as “human subjects” research. It also eliminates the ability of an institutional review board to waive informed consent requirements for NBS research.

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Father Time… Do Men Also Have Reproductive Clocks?

By Michele Goodwin

For centuries, researchers have studied multiple aspects of women’s reproduction.  Research tells us when women are more likely to become pregnant, when infertility kicks in, and even offers significant insights into the psychological dimensions of pregnancy and mothering from the dopamine release associated with breastfeeding to the potential for postnatal depression to occur after birth.  Perhaps for this reason, lawmakers and courts tend to focus on women’s environment and conduct, during pregnancy, as the space to promote fetal health and well-being with an eye toward healthy child development.

Has anything been missing? Until recently, very limited attention has focused on paternity.  Decades-old studies linking paternity to mental health conditions such as schizophrenia are valuable, but sadly overlooked. And recent research linking older paternity to autism is just beginning to gain attention.  Adding to this discourse and carving out unique pathways for understanding paternity is Professor Wendy Goldberg at the University of California at Irvine. 

In her book, Father Time: The Social Clock and the Timing of Fatherhood, she takes up overlooked phenomenon, involving fathering.  For example, do men experience postnatal depression?  It turns out that they do–and more.  Some expecting-fathers experience neuroticism, and even jealousy.   Goldberg studies different age groups to explain how the “social” clock for dads impacts their relationships with offspring, partners, as well as how it impacts fathers’ mental health.  It adds to an important, growing literature.

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

Ebola and Privacy

By Michele Goodwin

As the nation braces for possibly more Ebola cases, civil liberties should be considered, including patient privacy.  As news media feature headline-grabbing stories about quarantines,  let’s think about the laws governing privacy in healthcare. Despite federal laws enacted to protect patient privacy, the Ebola scare brings the vulnerability of individuals and the regulations intended to help them into sharp relief.

In 1996, Congress enacted the Health Insurance Portability and Accountability Act (HIPAA) to protect patient privacy.  Specifically, HIPAA’s Privacy Rule requires that healthcare providers and their business associates restrict access to patients’ health care information.  For many years, the law has been regarded as the strongest federal statement regarding patient privacy. But it may be tested in the wake of the Ebola scare with patients’ names, photographs, and even family information entering the public sphere.

Ebola hysteria raises questions not only about how to contain the disease, but also to what extent Americans value their healthcare privacy.  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?  For example, will Americans tolerate profiling travelers based on their race or national origin as precautionary measures?  What type of reporting norms should govern Ebola cases?  Should reporting the existence of an Ebola case also include disclosing the name of the patient?  I don’t think so, but the jury appears out for many.

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.  Read More

Technology and The Horrors of Child Pornography

By Michele Goodwin

A recent spate of arrests in New York emphasizes the potentially dangerous connection between technology and sex crimes.  In a landmark police bust, authorities tracked down and arrested more than seventy people in the New York City area who were trading child pornography.  Among those arrested were a rabbi, police chief, nurse, architect, and nanny.  Police infiltrated chat rooms where traffickers made available images of children engaged in sex acts with each other and adults.

What is the role of technology in the arrests and distribution of these images?  While technology helped officers track down child pornography traffickers, the internet also facilitated the trading of those harmful, illegal images of children.  On line chat rooms and other social network spaces provide for the broad-spread, easy distribution of child pornography.

Importantly, the children whose images are trafficked are re-victimized each time their images are shared, bought, and sold.  The frequency at which this can occur is intensified over electronic media, opening a horrific floodgate as demonstrated in the New York arrests where thousands of obscene, pornographic images of children were collected from dozens of confiscated laptops. Clearly, solutions to this problem must necessarily emphasize examining technology’s  unwelcome dark side.

Boko Haram Kidnappings and the Victims’ Mental Health

By Michele Goodwin

In mid-April, Boko Haram, an extremist organization operating in the northern region of Nigeria, kidnapped nearly 300 girls from their boarding school in Borno.  Kidnappers threatened thatNigeria_Boko_Haram_Kidnapping the girls would be sold to sex trafficking rings in neighboring countries, causing international alarm.   In the weeks since that mass kidnapping, world leaders have issued collective demands for the return of the girls–and placed pressure on Nigeria’s president, Goodluck Jonathan to take aggressive action to achieve the girls’ return.  Some pundits believe hope may be around the corner, because in the last two days, Boko Haram leaders claimed that they will release some of the girls to safe houses.  Yet, it remains unclear whether this will happen. Read More

Beyond Roe: Reproductive Justice in A Changing World

By Michele Goodwin

Blogging highlights from Rutgers-Camden (conference coordinated by Professor Kimberly Mutcherson)

A few blog highlights from the Beyond Roe conference at Rutgers-Camden:

Excellent Keynote remarks presented by Byllye Avery, founder of Black Women’s Health Imperative and MacArthur Foundation Fellowship (aka Genius Award). Dr. Avery urges a close examination of the states challenging reproductive access.  She explains a link between former slave states as the new battlefront in reproductive equality…

June Carbone gives a provocative preview of her forthcoming book with Naomi Cahn: The Marriage Market

Dazon Dixon Diallo, President of Sister Love, Inc-presents new empirical data on race, youth, and reproductive decision-making and African American youths’ perspectives on abortion.

Young scholars to watch out for:

Aziza Ahmed, Assistant Professor at Northeastern School of Law presents a project on Scientific Expertise in Abortion Jurisprudence.

Lisa Kelly, SJD candidate at Harvard Law School gives an enlightening talk on Transnational abortion rights and the litigation emerging in Latin American countries.

Terrific project on the rise by Grace Howard, a PhD student at Rutgers University who presented a talk: When the Crime is Birth: “Meth Babies” and the Limits of Pure White

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?

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Bei Bei Shuai First Degree Murder Charges Dropped

By Michele Goodwin

Less than an hour ago, Indianapolis prosecutor, Mr. Terry Curry agreed to drop first degree murder charges against Bei Bei Shuai in an agreement that required her to plead to a misdemeanor.  The case was a month away from trial in what would have been the first prosecution of a pregnant woman in Indiana for attempting suicide.  Ms. Shaui ate several packets of rat poison in a desperate attempt to end her life after being abandoned by her boyfriend.  After being saved by friends and doctors, prosecutors filed first degree murder charges against Shuai, because her baby died.

Bei Bei Shuai’s case highlights the turn to criminal prosecution in fetal protection cases as a terrible national phenomenon.  Shuai was spared the horrible fate experienced by poor women, many of color, across the U.S., including Regina McKnight, Paula Hale, Melissa Rowland, and others. In a forthcoming article to be published in the California Law Review, I argue that these prosecutions represent the new constitutional battlefronts as they burden pregnant women’s due process interests while also imposing the type of cruel and unusual punishment disallowed by the Eighth Amendment. I have argued in prior works found here and here that such prosecutions often involve racial profiling and create hierarchies among women’s pregnancies.  Indeed, most often the pregnant women targeted for threatening harm to their fetuses are so poor that they lack adequate legal representation, relying on overworked public defenders who make valiant efforts, but lack the economic wherewithal to  properly aid in these cases.   Shuai’s case was different in that she had Linda Pence, a valiant, private attorney, who spent over two years providing excellent pro-bono legal aid.

Bei Bei Shuai’s release from murder charges also represents another victory for Advocates for Pregnant Women, the leading organization advocating on behalf of indigent pregnant women.