Recently in bioethics Category
David B. Tibbals, MJLST Staff
Apparently Daniel Patrick Moynihan wasn't referring to the legal profession when he argued that "everyone is entitled to his own opinions, but not his own facts."
This past week, the U.S. Court of Appeals for the Fifth Circuit issued its ruling in Planned Parenthood v. Abbott, taking exception to the district court's version of the facts. The court's ruling upheld some provisions of House Bill 2, the Texas law that inspired the hours-long filibuster by Texas state senator Wendy Davis.
In an opinion authored by Judge Edith Jones, the court ruled as constitutional the law's requirement of doctors to have admitting privileges at a hospital within thirty miles of wherever they perform an abortion procedure. With a critical view of the district court's factual assessment, the court held that the thirty-mile admitting-privileges requirement does not "affect a significant (much less "large") fraction of . . . women, and it imposes on other women in Texas less of a burden than the waiting-period provision upheld in Casey."
Likewise, the court upheld the law's proscription of off-label usage of abortion-inducing prescription drugs. Despite a claim that this represented the complete embargo of what may be the only safe abortion procedure for some women, the court characterized this as speculation, cautioning that courts "must base decisions on facts, not hypothesis and speculation." And, as has been noted in this journal, "while FDA-approved indications cannot be construed to limit medical judgment, states . . . may enact legislation forcing compliance with such indications."
Given the general awareness of the case, an arguable circuit split, and the torrent of recent state abortion legislation, surely this case seems destined for the Supreme Court. But how can the nine justices possibly reach a conclusion if the two lower courts couldn't even agree on the facts? Didn't the Roe Court argue that abortion law must be "free of emotion and of predilection," premised on factual objectivity? Shouldn't these questions be easy to answer?
The disagreement within this particular case reflects a greater problem within the nation's abortion law canon. In the forty years since Roe, courts have struggled to consistently define just what virtues ought to guide abortion law.
Although the Court placed great emphasis on "now-established medical fact" from the outset, a closer look suggests that medical facts haven't been treated nearly as sacred as one might believe. Indeed, as Forsythe and Kehr note, the factual record in Roe was very much abbreviated and curated: The Court's ruling "was based on no factual record and no reliable medical data. The Justices did not analyze, let alone regulate, the contrary data; they simply ignored them."
Over the last forty years, the Court has bandied about terms such as "advanced knowledge" and "substantial medical authority," suggesting the primacy of medical facts. But regardless of how it has treated the particular facts it has examined, the Court has also failed to consistently adhere to the fundamental objectivity professed in Roe. Although the Court felt its ruling in Casey reaffirmed Roe's objectivity, its "undue burden" standard introduced a great deal of subjectivity into abortion law. As Justice Scalia articulated in Stenberg, what qualifies as an "undue burden" "cannot be demonstrated true or false by factual inquiry or legal reasoning."
It is yet unclear whether Abbott will indeed make it to the Supreme Court. No matter your view on the legal status of abortion, this fundamental inconsistency in the application of factual standards ought to be distressing. It is vital that the Supreme Court clarify a jurisprudence once labeled by former Chief Justice Rehnquist as "a virtual Procrustean bed."
Alison Key, MJLST Staff
Already this year, two states have expanded options for physician-assisted suicide (PAS) by striking all or part of statutes designed to criminalize the end of life treatment.
In January, a state trial court in New Mexico reviewed NMSA § 30-2-4, which prohibits physician-assisted suicide. The New Mexico trial court ruled that patients have a right under the State's due process clause to choose to pursue a physician's aid in dying, therefore the state law violated the state's constitution. Commentators expect this ruling to be reviewed by the New Mexico Supreme Court, or possibly expanded to other districts through similar trial court decisions.
In Minnesota, the victory was smaller, but application more widespread. Last week, the Minnesota Supreme Court struck portions of the Minnesota law prohibiting assisted suicide as unconstitutional. The Minnesota Supreme Court held that the Minn. Stat. § 609.215, which prohibits "intentionally advis[ing], encourag[ing], or assit[ing] another in taking the other's own life" was in conflict with First Amendment rights to free speech. Of the three actions prohibited in the statute, "advising" and "encouraging" suicide, the Minnesota Supreme Court ruled, are protected under the First Amendment.
While the Minnesota case was determined on constitutional grounds largely irrelevant to the ethics of PAS, both the Minnesota and New Mexico decisions have contributed to the larger, national trend of eliminating the legal barriers to PAS as a medical treatment. These two recent cases are significant in the larger debate on physician- and health care provider-assisted suicide, which has been gaining increased attention in recent years.
Minnesota and New Mexico, before this year, belonged to a majority of states that banned assisted suicide. (A few states, like Minnesota, also banned "encouraging" or "advising" suicide; these laws are rare because of First Amendment complications.) While there is no federal legislation on the subject (the Supreme Court in Washington v. Glucksberg held only that there is no right to PAS under the federal due process clause), four states have legalized PAS: Montana, Oregon, Vermont, and Washington. The ongoing litigation in New Mexico may soon bring that number to five. Three of these four states (Oregon, Vermont and Washington) legalized PAS through legislation or referendum, while Montana and parts of New Mexico have legalized PAS through state judicial precedent (in 2008 and 2014, respectively; the New Mexico decision from last January is currently only applicable in one district). Because all legalization efforts have occurred in the last three decades, the trend to eliminate legal barriers to PAS appears to be a recent one. Oregon has the oldest PAS law on the books, from 1994, while the remaining states have all legalized PAS since 2008.
In addition to the recent trend to legalize PAS, another interesting trend is the division in support for PAS between the public and experts. Among those presumed to be experts (based on subscription to the New England Journal of Medicine), about 67 percent of those polled in the United States indicated opposition to PAS. One of the more vocal opponents of PAS is a physicians' professional organization: the American Medical Association. The AMA takes the position that PAS is "fundamentally inconsistent with the physician's role" and is an improper extension of the right to refuse treatment. The AMA's published opinion has remained unchanged since 1996, suggesting it is not reflective of the current trends toward more liberal PAS laws.
Conversely, the public tends to support PAS, if termed correctly. A Gallup poll last May indicated that 70 percent of the public agreed that "when patients and their families wanted it, doctors should be allowed to 'end the patient's life by some painless means.'" The favorable percentage dropped to 51 percent when the question was changed to include the word "suicide," suggesting a social connotation of the word suicide, rather than disapproval of the act itself. The public's pro-PAS view seems to be driving the current trend to remove legal barriers to PAS.
It is clear that the hard stance against PAS has eroded in recent decades. The New Mexico state trial court decision in January announced, "[c]ertainly the medical and legal ethical considerations regarding end of life care have changed over the past fifty years. " Last year alone, six states introduced bills to directly legalize PAS, including Connecticut, Vermont (passed), New Jersey, Kansas, Hawaii, and Massachusetts. In four other states, bills related to the issue of PAS, short of full legalization were introduced.
After the Minnesota Supreme Court ruling last week, another case on assisted suicide pending before the Minnesota Supreme Court has the public's attention. With yet another PAS case coming before the Minnesota Supreme Court, New Mexico courts contemplating the expansion of the trial court ruling across the state, and bills becoming a frequent occurrence in other states, PAS legalization is becoming a trend to watch--in Minnesota, New Mexico, and nationally. With baby boomers nearing the age where end of life decisions become more pressing, discussions about legalizing PAS to expand end of life options will become more prevalent and more urgent.
Savir Punia, MJLST Lead Notes and Comments Editor
The Minnesota Journal of Law, Science and Technology Symposium article, The Role of Law in the Debate over Return of Research Results and Incidental Findings: The Challenge of Developing Law for Translational Science, by Professor Susan Wolf, discusses the current issues researchers are facing with genetic testing. At present, there is a dramatic rise in genetic-based research and tissue banks seeking to discover the genetic mutations and disorders responsible for some of the worst ailments plaguing humans today. As researchers are able to gather data using increasingly sophisticated tools, researchers are finding things they are not looking for, including information that could make a big difference for a donor. According to the 2012 New York Times Article, Genes Now Tell Doctors Secrets They Can't Utter, we are at an awkward interval where our ability to capture information is exceeding our ability to know what to do with it.
Currently, the federal government's National Institute for Health (NIH) is funding projects, including Professor Wolf's research project on return of results, in order to develop guidelines in this thorny subject area. Until then, researchers are operating with a heightened nervousness about when and how to disclose research results to study participants or their families. According to Professor Wolf's symposium article, researchers are already expressing anxiety "that they must navigate between legal threat on both sides - liability for failure to return findings on one side, and liability for wrongly returning on the other."
Given the current state, researchers are tasked with dealing with challenging situations on their own. For example, researchers studying genes unrelated to breast cancer notice members of one family have a breast cancer gene, does this obligate researchers to disclose this finding or not. Currently, a lot of this depends on the types of consent forms used in the research projects. For example, the New York Times article discusses to similar situations with very different results. In the first research project investigators discover that a family does have a breast cancer gene, but does not disclose it because the consent form stated no results would be returned, essentially tying the hands of the researchers. In another study, researchers discovered a woman who had a strong family history of breast and ovarian cancer did not carry her family's breast cancer gene, and they decided on ethical grounds to breach their consent forms stipulations in order to inform the woman and her family. These types of situations are becoming an ever increasing problem, and with no guidance or base line rule issued by any public health organization, researchers will continue to get caught up in return of research results.
Genetic research has brought about rapid advancement and change in how we approach human health, but it also has brought about some great challenges. As important as genetic research is, the individual submitting to it must not be forgotten. As genetic researchers sequence whole genomes and discover mutations in research participants' sequences, there will be more of an imperative to communicate those results back in order to help that participant seek preventative care. Moreover, genetics are unique in that mutations in one individual may affect that individual's entire family. Research participants' families have a stake in their family members' genetic sequences, because what is discovered there could also affect their own lives. Whether to return results to family members is a much more controversial issue and includes certain traditional healthcare privacy rules. As genetics continue to grow and play an important part in our healthcare, issues such as the ones above will need to be clarified and outlined. Research in this area is occurring at a fast pace, and Professor Wolf and her colleagues will be watched closely as they work toward establishing guidelines to power genetic research into the future.
by Mike Walls, UMN Law Student, MJLST Staff
What does it mean to be human? Where does our conception of life and death come from? Scholars and writers alike have been toiling with these questions for centuries. Our understanding of the term "human" is often embedded in the culture we grew up in. For some, human may simply mean the physical embodiment of our soul. To them, the human form is no more than just a transitory stage in our soul's celestial journey. For others, the term is specifically defined by our genetic makeup, chromosome for chromosome, allele for allele, etc. However, our legal understanding of "human" has been especially difficult to discern. States have taken many different approaches.
In his article, "Defining the Essence of Being Human," Professor Efthimios Parasidis discusses various states' interpretations of human. Parasidis discusses Ohio's interpretation of human life as beginning when one can detect the fetal heartbeat. For Ohio citizens, life begins with the beating heart, but it is unclear what this definition means for heart-related anomalies in adult-life, such as a person whose heart ceases to pump blood temporarily. Nebraska focuses on whether pain can be detected in the fetus, although the Act glosses over individuals who are incapable of experiencing pain, or fetus's with delayed sensory development. Mississippi's unsuccessful amendment attempted to define "person" as "every human being from the moment of fertilization, cloning, or the equivalent thereof," which left the door open to further criticism. Should splicing human genes with animal genes necessarily discount human-like organisms from our understanding of human? Would a "manimal" have been covered under the Mississippi law? It appears that elsewhere around the world introducing animal genes into the human form is forbidden, whereas human genes introduced into animals is sometimes permitted.
Parasidis' discussion of various states' conceptions of human life involving pain, heartbeats, and fertilization, led him to attempt to answer the question: "What distinguishes humans from other species?" His answer fell into two categories, the anthropological record (Homo sapiens, Homo neanderthalensis, etc.) and genetics. He concluded that both explanations are vague (or at least their boundary lines do more to raise serious questions than to console skeptics).
As I ponder Parasidis' article as a grown-up, the kid in me has found it difficult to set aside my childhood curiosity for science-fiction. What wisdom could I take from science-fiction without getting sidetracked? I turned to Dr. Moreau for answers. In 1896, H.G. Wells published The Island of Dr. Moreau, based on a mad-scientist destined to create half-men, half-animals, through vivisection. Wells wrote this piece without knowledge of genes or modern discoveries in anthropology and human origins. Wells' interpretation of human and animal is both poetic and informative, and his philosophy on scientific inquiry plagued by moral dilemmas speaks through Dr. Moreau.
Astonished by the bestial creatures he saw on Dr. Moreau's island, the weary naturalist Prendrick viewed Moreau as a heartless scientist, detached from the ethical world we live in. In my favorite chapter, Dr. Moreau Explains, Moreau lays out his unadorned view on the commonalities between man and animal. After Dr. Moreau inserts a blade into his own thigh, he states the following:
"Then I am a religious man, Prendrick, as every sane man must be. It may be I fancy I have seen more of the ways of this world's Maker than you--for I have sought his laws, in my way, all my life, while you, I understand, have been collecting butterflies. And I tell you, pleasure and pain have nothing to do with heaven and hell. Pleasure and pain--Bah! . . . men and women set on pleasure and pain, Prendrick, is the mark of the beast upon them, the mark of the beast from which they came. Pain! Pain and pleasure--they are for us, only so long as we wriggle in the dust . . . ."
On the one extreme, Dr. Moreau believed that anything fathomed under the laws of science (and thus, to him, created by God), was permissible scientific inquiry. To him, pain is unmistakably detached from religion--rather it is incidental to experimentation. Moreover, Dr. Moreau believed pain is simply whatever we make of the sensation ("The capacity for pain is not needed in the muscle, and only here and there over the thigh is a spot capable of feeling pain. Pain is simply our intrinsic medical adviser to warn us and stimulate us."). Moreau's religion is his scientific inquiry, completely unfettered from ethical obligations. On the other hand, Nebraska takes the opposite view. Pain is the factor between life and death. But for Nebraskan legislators, is the criterion of inflicting "pain" on a fetus any more of a medical description than it is a moral obligation? Dr. Moreau and Professor Parasidis would probably argue that simply detecting pain is a smokescreen for anti-abortionists. The Nebraskan viewpoint that pain is a medical factor that necessarily dictates abortion rights might be fogging the issue. I struggle to understand some of our states' preemptive abortion policies, as does Professor Parasidis, in their inability to separate conceptions of human life (when pain is felt) from their legal obligations owed to the individual (informed by science).
The point of all this is rather simple. No matter how we decide to determine what is human, or when life begins, public policy should influence how exacting our legal definition of human is. Dr. Moreau wouldn't sacrifice scientific inquiry for the ethical norms of others. To him, everyone else must reconcile their moral differences with science. Professor Parasidis argues that when legislators use descriptive characteristics (like pain) in their legal definitions, they should also consider other policy implications. Besides the fetus, who else is affected? By redirecting our focus to science, we may free ourselves from biases currently clouding our reproductive rights jurisprudence, and potentially answer the question, what is the essence of being human?
by Sabrina Ly
On February 25, 2013, an article was published in The Dartmouth describing the implementation of its Committee for the Protection of Human Subjects. The purpose of the committee is to answer ethical questions and review proposals regarding human subjects participating in research at Dartmouth College. The committee is comprised of experts and community members "who analyze the risk posed to participants by Dartmouth-affiliated researchers' studies." The timing of its creation could be coincidental, but may have been in response to legal action taken against Boston College subpoening confidential data provided by research participants in the "Belfast Project" in 2012.
Prior to interviews taking place as part of the Belfast Project, researchers promised interviewees that their identities and information contained in the transcripts would not be released until after their deaths. However, upon discovering the existence of the transcripts, British law enforcement worked with the U.S. Department of Justice to subpoena the transcripts to use in its criminal proceedings. This raised significant ethical issues pitting the needs of law enforcement against the need for participant confidentiality in certain research that benefits the public.
by Jeremy So, UMN Law Student, MJLSTManaging Editor
On October 28, Australian researchers published new information about the genetic basis for endometriosis, a condition where the cells lining the uterus flourish in other areas of the body. The researchers, instead of recruiting their own research subjects, analyzed samples stored in biobanks in Australia, Japan, and Europe. Because of their approach, the researchers were able to identify common markers that appeared across the ethnically-diverse study population. The Australian team's findings highlight the increasing importance of biobanks--repositories for biological research samples--which have become a valuable resource in the fields of genomics and personalized medicine
by Ryan J. Connell, UMN Law Student, Joint Degree Program Fellow, MJLST Staff
As genetic research continues to develop, researchers are more apt to make incidental discoveries in the course of the research on a subjects DNA. Susan Wolf, Founding Chair of the University of Minnesota's s Consortium on Law and Values in Health, Environment & the Life Sciences, points out in her article "The Role of Law in the Debate over Return of Research Results and Incidental Findings: The Challenge of Developing Law for Translational Science," that, with this development, there is a serious question that must be asked, but that the law does not really answer: do researchers have to report these incidental findings to the subject?
by Emily Puchalski, UMN Law Student, MJLST Notes & Comments Editor
As scientific research and technological advancement abound in our modern world, often times the law struggles to keep up. The law's struggle to keep up is evident in debates centering on defining personhood. The question of what it means to be a person/human involves the controversial issues of abortion and evolution, which have divided our nation for decades. Although scientists are helping our understanding of what being human means by studying life at its most basic, controversy abounds regarding not only the results of the studies but also the theoretical underpinnings of even allowing the studies. As our nation becomes more polarized between conservative and liberal thinkers the struggle of defining personhood has come to the forefront in politics.
by Ude Lu, UMN Law Student, MJLST Staff.
GMOs, genetically modified organisms, have long been a part of our daily diet. For example, most of the soybeans and corn on the supermarket shelves are GMOs. Currently, the issue of whether these GMOs should be labeled so that customers can make informed purchases is in a heated debate in California. California Proposition 37, which would require labeling of GMOs, will soon be voted in November this year. Proponents from both sides have poured millions of dollars into the campaign.
by Keli Holzapfel, MJLST Student Editor-in-Chief
Given the importance of results discovered by biorepositories and their implications for an individual's health care choices, I believe that the individual has the right to receive his results despite their lack of verification. However, this right to receive results should be premised upon the individual's explicit consent to receive his results, and upon the understanding that by receiving these results, the burden of their verification shifts from the biorepostory to the individual.