Family, Privacy, Secrets & The Law

Join us for an important meeting:

Roundtable: Family, Privacy, Secrets & the Law  March 7-8, 2013

March 7-8, 2013
University of Maryland
Francis King Carey School of Law
500 West Baltimore Street
Baltimore, MD 21201

March 7, 5 p.m. – Book Reading and signing by Jonathan Odell, author of The Healing

March 8, 9 a.m. – 4 p.m. – Roundtable discussions

Eventbrite - Family, Privacy, Secrets & The Law Roundtable

Family, Privacy, Secrets & the Law roundtable engages the intersections of medicine, criminal law, family law, and constitutional law. The conference faculty will chart contemporary issues that span genetic privacy, disclosure of parental identity in assisted reproduction cases and DNA conscription to domestic violence and child sexual abuse.

There are times in which the law protects secrets, such as between a lawyer and client, doctor and patient, or clergy and congregant.  Yet, there are times when the law demands that secret-keepers reveal their confidences such as the increasing demand on doctors to disclose confidential medical information on pregnant women to law enforcement. How should we understand the contours and boundaries of these dynamics within the law?  On one hand, law tends to address secrets through the lens of legal duties to protect the vulnerable via its regulations governing abuse and neglect. On the other hand, this set of laws captures only a small percentage of secrets held by family members and other trusted “secret keepers” (doctors, clergy, extended family, neighbors) who, for a variety of reasons elect not to inform the state.

This roundtable interrogates states’ obligations to protect the vulnerable and at what cost. It considers the ways in which the law promises/owes protection and the success, failure or harms it brings about when endeavoring to intervene and offer protection. Against that backdrop, the law also has the obligation to honor individual and family autonomy and privacy.

Schedule

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Five Signs Your Surrogacy Arrangement Has Gone Awry

By Judith Daar

A recent news item about a gestational carrier who refused a $10,000 bribe from the intended parents to abort a fetus with severe abnormalities has stirred debate about the allocation of fundamental rights when reproduction is shared among multiple parties.  Though surrogacy and abortion are rarely aligned, the pregnancy-inducing act of hiring a woman to carry a child to term collided with the pregnancy-ending medical procedure in Crystal Kelley, a single unemployed mother of two who agreed to accept $22,000 to help another couple struggling with infertility.  All was well until an ultrasound at five months gestation revealed a fetus with severe medical problems.

Until that moment, as is true in the vast majority of surrogate parenting arrangements, all had gone smoothly between the intended parents – a married couple with three existing children – and the surrogate.  But the medical revelations tore the parties apart. The couple asked Kelley to abort the fetus immediately, urgency flaring as the pregnancy bumped up against the legal limit for lawful termination in Connecticut where the parties resided.  Kelley refused, saying she wanted to give the baby a fighting chance. Desperate, perhaps, the intended parents offered the surrogate a bribe to abort the fetus. She declined and soon thereafter a legal team was put in place, with both sides lawyering up.

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The ADA and Declining Down Syndrome Birthrates

[Posted on behalf of Dov Fox]

Having a child is hard work. It can be especially taxing—“physically, emotionally, and of course, financi[]ally, to bring a child with [disabilities] . . . into the world and raise it,” as commentators have noted in response to an earlier version of this piece that Chris Griffin and I wrote yesterday on Huffington Post. So it is not difficult for many of us to sympathize with the genetic parents who, CNN reported later in the day, offered their surrogate $10,000 to have an abortion when they learned “the baby would need several heart surgeries” and “ha[ve] only about a 25% chance of having a ‘normal life.’”

At the same time, doctors and authors justly celebrate the increasing willingness of those who decide that, for them, it makes sense to bring a pregnancy to term after getting a positive test for a condition like Down syndrome. These advocates explain the perceived shift in social norms by noting that the landmark Americans with Disabilities Act (ADA) provides legal protections to combat employment discrimination and enhance access to public accommodations. What they fail to appreciate is that these protections have not always brought with them the anticipated acceptance of having a child with disabilities.

A study we published in 2009 reveals a 25 percent decline in Down syndrome birthrates nationwide after the first President Bush signed the ADA into law. Controlling for variables from maternal age and marital status to prenatal testing and access to abortion, we found that about 15 fewer children per 100,000 were born with Down syndrome after the law was passed. So here’s the puzzle: Why would fewer children be brought into the world just as they are being afforded greater opportunities in life?

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You Talkin’ to Me?

by Suzanne M. Rivera, Ph.D.

The principle of justice articulated in The Belmont Report requires equitable selection of human research subjects.  Equitable in this context means that the risks and benefits of the study are distributed fairly.  Fairness has two components: 1) avoiding exploitation of the vulnerable (e.g. preying upon a poor, uneducated population) and 2) avoiding the unjustified exclusion of any population ( whether out of bigotry, laziness or convenience).  

Recruitment strategies invariably shape the selection of research subjects and the extent to which a pool of participants really represents a cross-section of society.  Institutional Review Boards (IRBs) are charged with evaluating whether study recruitment plans and materials used to obtain informed consent are easily understood and free of misleading information.  This is relatively straightforward when researchers, IRB members, and study subjects all speak the same language.  But when studies are done in geographical areas that include numerous cultural and language communities, it can be quite tricky.

One of the barriers that prevents people from enrolling in (or even knowing about) studies is a lack of awareness and planning by researchers to address language differences.  The human research protection regulations at 45 CFR Part 46.116 require that informed consent information must be provided to research participants (or their representatives) in language understandable to them.  IRBs are supposed to be vigilant about this and require investigators to obtain translated Informed Consent Documents (ICDs) for use with non-English speaking research subjects.  But researchers commonly balk at this expectation, saying it’s unreasonable.   (A disproportionate number of objections have been raised to me thusly, “And what am I supposed to do if someone shows up speaking only Swahili?!”) Read More

Time Magazine on Solving Health Care’s #1 Problem: “All the Prices Are Too Damn High”

By Patrick O’Leary

The cover story of the March 4, 2013 issue of Time Magazine is a piece by Steven Brill titled Bitter Pill: Why Medical Bills Are Killing Us. The article has apparently made a pretty big splash: in an interview (Part 2, Part 3) with Brill last week, Jon Stewart of Comedy Central’s The Daily Show told his audience that the article was so good that it “should be required reading for . . . not only every individual in this country, but lawmaker in this country.”

What most seems to fascinate Stewart, and what Brill emphasizes, is an insight that is old hat to health law types: the market for health care is just plain screwy. Brill explains that health care consumers “have no choice in what you’re buying, you have no idea what you’re buying, you have no idea what the price is, even when you get the bill you have no idea what it says.” The starting point for the article was Brill’s observation that in all the debate over the last few years about health care, “we seem to jump right to the issue of who should pay the bills, blowing right past what should be the first question: Why exactly are the bills so high?” Read More

Petrie-Flom Interns’ Weekly Round-Up: 2/23-3/01

By Hyeongsu Park and Kathy Wang

  • As the federal government clambers to meet deadlines and broker deals ahead of the sequestration, Medicare remains, again, one of the more contentious issues. While Medicare spending has slowed, Democrats are resisting any further spending cuts to such entitlement programs beyond the $300 billion reduction agreed upon last year.
  • The healthcare sector has been suffering from a lack of consensus and resources, both financial and in human capital. Adding to these burdens is the federal panel on the health care work force that, two and a half years after its creation, has never met because they were never appropriated any funding. The commission was created to debate over crucial details of the health care law.
  • Despite the hullabaloo in Europe over the contamination of beef products with horse meat, the U.S.D.A. is on the verge of approving a horse-slaughter plant in New Mexico for the human consumption of equine meat.
  • Lower-income consumers have been waiting for the release of knockoff versions of highly expensive biotech drugs, but it seems that they will have to wait some more. Pharmaceutical company projects to create such “biosimilar” drugs have faltered and policy has not been clearly established as to how to proceed.