Tag: Monica List

Counting Women of Color: Being angry about “missing white woman syndrome” is not enough

Bioethics in the News purple and teal icon

This post is a part of our Bioethics in the News series

By Monica List, PhD

Gwen Ifill is credited with coining the term “missing white woman syndrome” at the “Unity: Journalists of Color” conference in 2004. She used it to describe the disproportionate attention garnered by criminal investigations in which white women are victims, and in some cases, perpetrators. Discussions of this phenomenon resurfaced in the wake of recent media attention to the case of Gabby Petito, a 22-year-old white woman from Long Island, NY, reported missing on September 11th—and whose death, confirmed on September 21st was determined to be a homicide, allegedly at the hands of her fiancé.

It is not the attention on these cases themselves that is the issue, but rather how they distract focus away from similar cases occurring at a much larger scale, such as the disappearance of Black and Indigenous women. According to NPR, in 2020 nearly 100,000 Black women and girls were reported missing in the United States. In 2019, more than 5,590 Indigenous women were reported missing, although this may be a gross underestimation given the lack of adequate reporting systems. Most of us would find it difficult to name a single one of them. Yet in the past weeks, our screens, newspapers and minds were filled with Gabby Petito’s name, her story, and her images. Petito’s death is undoubtedly a tragedy, and the fact that it has been so prominently reported is not problematic in of itself, but it is symptomatic of a deeper failure.

Image description: a puzzle of solid white puzzle pieces is assembled with one missing piece remaining in the center leaving a black empty space. Image source: Willi Heidelbach/Pixabay.

From a racial justice perspective, part of the issue is the entrenched racial stereotyping underlying the belief that women of color are somehow at fault for their own disappearances and any violent acts against them. According to Dr. Ashraf Esmail, Director of the Center for Racial Justice at Dillard University, there is a perception that risky lifestyles and personal choices are a license to shift the blame to the victim and diminish social responsibility for these cases. A report published by the Urban Indian Health Institute found that 38 percent of media articles reporting on murders and disappearances of Indigenous women and girls made references to drugs or alcohol. Narratives portraying women of color as angry or hypersexual are also part of this problematic perception, says Dr. Kaye Wise Whitehead, associate professor of Communications and African American Studies at Loyola University Maryland.

But this is not simply another failure of the justice system to respect and protect the lives of Black people and other people of color. In addition to being a racial justice issue it is a public health issue. As with other public health issues, the collection, interpretation and reporting of data can be both a problem and a solution. In this case, it is one of the deep roots of a complex, systemic problem. The title of a 2020 article on the crisis of missing and murdered Indigenous women and girls summarizes it well: “They Disappear Not Once, but Three Times: In Life, In the Media, and In the Data”.

There are levels to how women and girls of color disappear in the data. First, the racial and ethnic breakdown of data categories unsurprisingly reflects the pervasive structural and systemic racism of our information management systems. The FBI’s missing person databases’ race categories are Asian, Black, Indian, unknown, and White. There is no category for Hispanic or other ethnicities, nor any subcategories for different Indigenous groups. Even within those limited categories, race misclassification is a common issue. The Missing and Murdered Indigenous Women and Girls Report found one instance in which a law enforcement agency still used an outdated coding system dating as far back as the 1960s, in which “N” was interchangeably used for “Negro” and “Native American.” This report also identified several police departments as including American Indians and Indian Americans in the same category. At least one of the databases (the FBI’s National Crime Information Center) does not allow data to be analyzed using race and gender combinations (e.g. “Black” and “woman”), making it difficult to obtain information on actual numbers of women of color reported missing.

Image description: a participant in the Greater Than Fear Rally & March in Rochester, Minnesota is shown wearing a grey knit hat, and they have a handprint on their face in red paint that covers their mouth. Image source: Lorie Shaull/Flickr Creative Commons.

Second, there is no national, unified system for the reporting of missing persons. In the United States, there are three federal missing person databases: the FBI’s National Crime Information Center (NCIC); the FBI’s National DNA Index System (NDIS), and the National Missing and Unidentified Persons System (NamUs), administered by the Department of Justice. One failure of this setup is that data on missing individuals entered into one database does not automatically populate or transfer to other databases, and access varies. NCIC and NDIS can only be accessed by local, state and federal criminal justice agencies, while NamUs is public and can be accessed by families of missing persons, law enforcement, medical examiners, and victim advocates. While NamUs seems like a good resource, especially to those victims and families who fall through the cracks of law enforcement, it is not mandatory for criminal justice agencies to report to NamUs in all states. Additionally, while almost all law enforcement agencies use NCIC, only a small fraction are registered to use NamUs. In a country with well-documented systemic racism issues, leaving federal reporting up to the good will of local law enforcement is a losing game for women of color.

The final piece of the puzzle is a lack of inclusion of relevant socioeconomic data that would allow a contextualized analysis of cases. This would not only increase chances of recovery of missing women and girls of color, but also help plan and implement preventive strategies. A first step to achieving this is making the collection and analysis of missing persons data inclusive and intersectional. This includes efforts to decolonize data, which from a public health perspective means gathering the data that a community itself finds meaningful, in ways that align with their social structures and cultural practices. But to be clear, these solutions also need good allies outside of those communities. Tomorrow, another Black or Indigenous woman will go missing, and many of us will be sad and angry again. In the meantime, the systems that continue to render missing women of color invisible and uncountable remain unchanged.

Monica List, PhD, is an assistant professor in the Center for Bioethics and Social Justice in the Michigan State University College of Human Medicine; Dr. List is Head of Research and Animal Welfare for World Animal Protection, an international non-profit animal welfare organization.

Join the discussion! Your comments and responses to this commentary are welcomed. The author will respond to all comments made by Monday, November 8, 2021. With your participation, we hope to create discussions rich with insights from diverse perspectives.

You must provide your name and email address to leave a comment. Your email address will not be made public.

Continue reading “Counting Women of Color: Being angry about “missing white woman syndrome” is not enough” →

The face of Zika: women and privacy in the Zika epidemic

Bioethics-in-the-News-logoThis post is a part of our Bioethics in the News series.

By Monica List, DVM, MA

A quick online search for “Zika” reveals two kinds of images, those of vectors and those of victims. Images of Aedes sp. mosquitoes, vectors of the Zika, Dengue, and Chikungunya viruses, dominate the virtual landscape, followed closely by images of infants and children with microcephaly, as well as women; some pregnant, some caring for children with Zika-related congenital conditions. This abundance of images of children and mothers affected by Zika is not surprising, as they are, in fact, the populations most seriously harmed by the virus. There is now enough evidence to infer that prenatal Zika virus infection can cause microcephaly and other brain anomalies in the developing fetus (Rasmussen et al 2016). Embedded in public health communiques and media coverage, these publicly available images are undoubtedly an important part of the narrative of the Zika epidemic; they provide a face and a human dimension to a risk often perceived as distant and abstract by residents of latitudes currently unaffected by the virus. In this sense, the images perform an important role; they humanize, contextualize, and help raise awareness of a serious disease that is expected to continue to spread (CDC, 2016). Regardless of the many ways in which these images can improve our understanding of how Zika is affecting the lives of people worldwide, and may eventually affect ours, we must exercise caution in our use of them. These images are not just representations of bodies, they are instances of a person’s life, and furthermore, often present facets of that life that are considered private to some extent, such as pregnancy and illness.

26355934521_c00f7cb90c_z
Adult, male mosquitoes are inspected by an IAEA technician at the Agency’s Insect Pest Control Laboratory in Seibersdorf, Austria. Image source: Dean Calma / IAEA via Flickr.

While privacy is a central topic in bioethics, the kind of privacy at stake in this case may not fit neatly into bioethical definitions and guidelines. Forms of privacy relevant to bioethics include informational privacy, physical privacy, decisional privacy, proprietary privacy, and relational privacy (Beauchamp and Childress 2013). It is plausible to say that media representations of these mothers and children include most of these forms, but also other aspects that may fall outside of these definitions. A BBC News report on babies born with microcephaly attributed to in-utero Zika infection in Pernambuco, Brazil, not only shares private information such as details on the health and pregnancies of the featured mothers, but also allows us a very close look at their private lives; their homes, bedrooms, and even the intimate suffering caused by disease. Even if subjects have consented to the use of their likenesses and stories, is this an encroachment on privacy, and if so, one that would fall within the purview of bioethics?

In bioethics, discussions of privacy generally focus on situations involving patients or subjects in medical care or research settings. Beyond these settings, safeguards such as Institutional Review Board approval are in place for most other research done in an academic setting or for academic purposes, but the same does not apply to non-academic research, including journalistic investigation. While journalism has its own set of ethical principles and guidelines, these tend to be more flexible regarding notions of privacy; the sharing of information that might be considered private in a healthcare setting is allowed in the media under the freedom of press principles. A common protection available to subjects in both healthcare and media settings is informed consent; in both cases one of the main roles of informed consent is to protect subjects from harm, acting on the principle of respect for autonomy (Beauchamp and Childress, 2013). Considerations of autonomy and harm are central to ethical dilemmas in journalism, but they tend to be open to interpretation, arguably more so than in bioethics (Richards, 2009). Furthermore, this interpretation is influenced by where loyalties lie in each case; for healthcare practitioners and researchers, the patient or subject is the priority, while journalists have a prima facie duty to the public interest (Canadian Association of Journalists, Ethics Advisory Committee, 2014). Another issue with consent in this case is that while consent may change over time, it would be practically impossible to completely remove the availability of images and stories that have already been made public, especially with the growing use of the internet and digital communications. One can assume that even if the content is eventually removed from the digital sphere, the images and stories of these mothers and children can be downloaded, saved, and shared without limit.

24906688791_dc27c67654_z
In Recife, Brazil, Minister Teresa Campello talks to residents of Recife, Brazil, as part of a Zika prevention campaign “Dia Nacional de Mobilização Zika Zero.” Image source: Ministério do Desenvolvimento Social e Combate à Fome on Flickr.

In this case, the insufficiency of consent is further complicated by the social location of people being portrayed. Although in theory privacy protections apply equally to all, privacy is a markedly gendered and raced concept. For example, since fertility and reproduction can be said to play a role in a nation’s sustainability, many governments see it as their business to legislate over women’s bodies, dictating if and how women have a right to make autonomous reproductive choices (Holloway, 2011). Notably, the majority of women portrayed by the media coverage of the Zika epidemic are poor women of color; part of the reason is simply due to the geographical location of the epidemic, as well as the fact that poor populations generally have access to less resources to prevent and treat disease. Populations whose medical care is attached to some aspect of identity, for instance age, gender, race, or ethnicity, and whose autonomy is diminished in relation to this identity are considered vulnerable (CIOMS, 2002; Holloway, 2011). In research and medical care, these individuals are subject to protections regulated at the international and national levels. While ethical guidelines in journalism also include special considerations for vulnerable subjects, definitions of vulnerability and how to manage it are often vague, and always weighed against the need to provide a public service (Richards, 2009). Usually, the only protection vulnerable subjects have access to is informed consent, which is of little use if their autonomy is already compromised. We must also consider that vulnerability goes beyond diminished autonomy due to one’s age, gender, or race; it also includes, for example, an increased exposure to social risks that can result in discrimination, loss of opportunity, and even violence. Zika-infected pregnant women portrayed by the media can find themselves under even greater public scrutiny, and may be denied access to options such as elective abortion and participation in research that could potentially help women in similar situations (Harris et al, 2016). But, this should not mean that we cannot access or share information about vulnerable subjects, it just means that as is often the case, consent is not enough, especially when this information is likely to be widely broadcasted.

Given the importance of these stories in shaping a public narrative of the Zika epidemic, and the risk of harming vulnerable subjects, bioethicists should take an active part in laying out guidelines for the sharing of this information. Some aspects to consider in these conversations are cultural assumptions about privacy, our purposes for sharing this information, and whether or not it is contextualized by a broader story—not simply a voyeuristic look into the suffering of others. Additionally, breadth of scope should generally be considered in order to assure that images and stories do not focus on one aspect of a broader problem. A more balanced coverage of the Zika epidemic should also focus on the stories of researchers, government officials, tourists, and others touched in some way by this crisis. Finally, the kinds of information outlets we are using should be of primary concern; information shared on the internet, a generally open and unregulated source, can widely expose intimate aspects of a person’s life, and cause harm beyond what we can imagine.

list-cropMonica List, DVM, MA, is a doctoral student in the Department of Philosophy at Michigan State University. She earned a veterinary medicine degree from the National University of Costa Rica in 2002, and an MA degree in bioethics, also from the National University, in 2011.

Join the discussion! Your comments and responses to this commentary are welcomed. The author will respond to all comments made by Thursday, June 2, 2016. With your participation, we hope to create discussions rich with insights from diverse perspectives.

You must provide your name and email address to leave a comment. Your email address will not be made public.

Click through to view references

Bioethics and academic freedom: thoughts on the “Bad Girls” case

Bioethics-in-the-News-logoThis post is a part of our Bioethics in the News series. For more information, click here.

By Monica List, DVM, MA

In early 2014, Atrium (Northwestern University’s Medical Humanities and Bioethics Journal) published a special issue entitled “Bad Girls,” edited by that university’s medical historian Alice Dreger. The issue presented a series of articles showcasing women (or groups of women) who defied norms and established practices in the realm of health and healthcare. As expected, most of the articles were provocative, but one article in particular, “Head Nurses” by William Peace, proved to be more inflammatory than the rest. The article is a personal narrative of the author’s experience as a young, newly disabled person, questioning the extent to which his disability would change his life, and specifically his sexuality. Peace addresses a number of sticky issues, including intimate relationships between patients and healthcare providers, and the lack of attention to the topic of sexuality in the disabled population. However, it was perhaps Peace’s explicit description of an intimate encounter with one of his female nurses (the “bad girl” in this story) that sparked the controversy eventually leading to Northwestern University’s censorship of the issue and subsequent removal of Peace’s article from the journal’s online version (note: after pressure from “Bad Girls” editor Alice Dreger, the full online version of the issue was made available again; however, due to Northwestern’s establishment of an Atrium oversight committee, the journal is currently on hiatus by decision of the editorial board).

Silence, Censor, Restraint
Image Description: An individual with light skin, brown hair, and a large piece of tape covering their mouth stands in front of a wall that is covered in writing. Image Source: Kayla Sawyer via Flickr

Peace’s article presents a wealth of interesting bioethical issues, but here I will focus on a broader discussion of academic freedom sparked by Northwestern University’s censorship, and more specifically the question of whether professional organizations should play a more active role in defining and defending academic freedom. Per the American Association of University Professors (AAUP) 1940 Statement of Principles on Academic Freedom and Tenure, university faculty are free to conduct research and present results (limited by considerations of profit), to teach their subject and hold related discussions (as long as unrelated or unnecessary controversy is not introduced), and to express themselves as citizens, without the constraints of censorship or disciplinary action from their institutions. With regard to this last point, the AUUP Statement clarifies that in addition to institutional duties and regulations, academics may be bound by special obligations, including professional duties.

While a great number of professional organizations have endorsed the AAUP Statement, few (if any) have issued their own statements or guidelines on academic freedom (note: the American Society for Bioethics and Humanities bylaws- Article III, section 2.3 state: “The Society may adopt positions on matters related to academic freedom and professionalism in the fields of bioethics and humanities in health care upon an affirmative vote of two-thirds (2/3) of the full Board of Directors. The Board may consider a position on its own motion or upon request in writing signed by fifty (50) members eligible to vote,” but no further guidance is provided). Given the nature and political implications of bioethics, would bioethicists benefit from a more specific set of guiding principles in their exercise of academic freedom? The Atrium case provides good evidence that the answer to this question is yes.

The controversy over Northwestern’s censorship of the “Bad Girls” issue was featured in various media outlets, including The Huffington Post, The Chicago Tribune, and Inside Higher Ed. The professional bioethics community was less keen to respond, judging by the number of related articles and posts published in bioethics journals. A search through the journals listed on the American Society for Bioethics and Humanities website revealed only one result, a blog post by Rachelle Barina and Devan Stahl featured on the American Journal of Bioethics blog, but this response focused more on the content of the article than on the matters of censorship and academic freedom. Of course, since bioethicists are spread across multiple disciplines and professions, they could be discussing this in places other than bioethics journals, but it is more likely that they were simply silent on this matter (note: the Journal of Nursing published a reprint of Lisa Black’s Chicago Tribune article in their July 2015 issue). If this were the case, it would not be the first time that bioethicists were accused of being silent on an issue that warrants their attention, and more importantly, their voices. In “The Silence of the Bioethicists,” J.L. Nelson (1998) wonders why, until then, bioethicists had remained remarkably silent on the topic of transsexualism. Bioethicists’ relative silence continued for a number of years, prompting Nelson to revisit the topic in a related article in 2012. Although the connection between these publications and the matter at hand may not seem obvious, I see relevant links. Nelson’s proposed causes for the silence of bioethicists on matters of transsexualism may well apply to their silence on academic freedom in this case. Nelson (1998) argues that our focus on individual autonomy and moral agency often overshadows the importance of the social and political structures that distort that agency.

If academic freedom is defined and exercised as the ultimate expression of agency and autonomy, would it not be paradoxical for bioethicists to restrict it by establishing guiding principles? Perhaps yes, but it is an avenue worth exploring, given the importance of academic freedom in allowing scholars to address difficult (and often uncomfortable) issues without fearing for their livelihoods or even their personal safety. For these reasons, the guidance and backing of a professional organization would be of great value in overseeing, but not silencing or censoring their work.

list-cropMonica List, DVM, MA, is a doctoral student in the Department of Philosophy at Michigan State University. She earned a veterinary medicine degree from the National University of Costa Rica in 2002, and an MA degree in bioethics, also from the National University, in 2011.

Join the discussion! Your comments and responses to this commentary are welcomed. The author will respond to all comments made by Thursday, September 3, 2015. With your participation, we hope to create discussions rich with insights from diverse perspectives.

You must provide your name and email address to leave a comment. Your email address will not be made public.

Click through to view references

Statewide Campus System Medical Ethics Day

MSU-Seal-Green_RGB-1-inchLast week, close to 80 medical residents from different specialties participated in the College of Osteopathic Medicine’s Statewide Campus System  Medical Ethics Day. Ethics Day provides training in clinical ethics for osteopathic residents in various specialties from around the state.

The morning session included two presentations, one by MSU CHM West Instructor Dr. Michael Wassenaar on Tools for Ethical Problem Solving, and the second by Center Professor Dr. Len Fleck on The Ethical Challenges of Parsimonious Care. In the afternoon, the residents were split into small groups; each group had the opportunity to engage in discussion and analysis of several medical ethics cases. Ethical issues presented by these cases included complex topics such as surgical sterilization, access to high costs procedures and medications, and palliative care. Center Undergraduate Adviser Monica List led one of the small group discussions.

This is the tenth year that CEHLS faculty have helped facilitate the Statewide Campus System Medical Ethics Day. Ethics Day is held every fall.

Read more about the COM Statewide Campus System.

Center faculty present at 16th Annual ASBH Meeting in San Diego

asbh logoThe 16th Annual American Society for Bioethics and Humanities Meeting was held October 16-19, 2014, in San Diego, CA. Three Center faculty members attended and presented on various topics.

tomlinsonTom Tomlinson, PhD
Along with John Lizza, Robert Truog, and Don Marquis, I was on a panel entitled “Donation Following Cardiac Death: Does It Matter Whether Donors Are Really, Most Sincerely Dead?” The discussion focused on when it was legitimate to say that these donors had “irreversibly” lost circulatory and respiratory function, so that they could be declared dead prior to organ retrieval. My panel presentation was titled “Irreversibility is a Relational Property.”

list-cropMonica List
I presented a paper titled “The Case for Veterinary Bioethics”; this was part of a paper session on Animal Ethics. My presentation focused on examining the ethical frameworks used in veterinary medicine, and identifying gaps in these frameworks that may signal a need to expand them. I proposed that these broadened frameworks can be conceptualized as “veterinary bioethics.” Despite the fact that animal ethics has never been a very prominent track at ASBH conferences, the session was well attended. I received several interesting questions from the audience; one of those questions was whether or not a veterinary bioethics framework would contribute anything new to medical bioethics. I thought this was a great question that our work at the Center might help answer, since our faculty teach in the Medical Colleges as well as the Veterinary College. Building on the feedback and comments I received, I hope to further develop this project for future publication.

Leonard Fleck, PhDLeonard Fleck
I did a presentation titled “Whole Genome Sequencing: The Devil in the DNA.” The basic argument was this: Whole Genome Sequencing [WGS] is very promising from a medical point of view. It can be used to identify an individual’s responsiveness to drugs, or an individual’s carrier status (which may be important for reproductive decisions), or whether an embryo is free of serious genetic vulnerabilities. The promises of WGS are easier to realize because the cost of doing this is about $1000 today. However, there are some devilish details within this DNA. Continue reading “Center faculty present at 16th Annual ASBH Meeting in San Diego” →

Mighty mitochondria: a tiny organelle that can, and should, save lives

Bioethics-in-the-News-logoThis post is a part of our Bioethics in the News series. For more information, click here.

By Monica List, DVM, MA

A June 3rd headline from The Guardian reads: “Genetic treatment using three-parent embryos may be ready in two years.” This provocative headline surely raised many hackles. The thought of genetically modifying humans commonly produces a visceral reaction, even in those who in principle are not opposed to genetic modification. Perhaps this visceral reaction is well founded; after all, it is one thing to tinker with the genome of a corn plant to make it more resistant to pests or drought, but to modify the genetic code of human beings may change what it means to be human.

This deeply ingrained fear of genetic modification in humans may be responsible in part for negative reactions to proposals to conduct Phase 1 clinical research trials for mitochondrial replacement, the novel procedure that this Guardian article refers to. Mitochondrial replacement involves the replacement of defective maternal mitochondria with mitochondria from a healthy female donor.

DNAMitochondria, the cellular organelles that act as tiny powerhouses, are always inherited from the mother. An interesting feature of mitochondria is that they have their own form of DNA, mtDNA, which consists of 37 genes, an insignificant amount relative to the estimated 25,000 genes that make up the human genome. However in some women mitochondria carry mutations that may result in severe and often fatal disease in their children. (Callaway, 2014)

While maternal carriers can appear to be perfectly healthy, mtDNA is much more susceptible to mutation – it mutates about 1000 times faster than chromosomal DNA – so when defective mtDNA is passed on to the offspring the effects of those mutations can manifest as mitochondrial disease. Among other conditions, mitochondrial disease, for which currently there is no treatment, can result in kidney disease, blindness, deafness, neurological problems, and dementia. (Nuffield Council on Bioethics, 2012)

Two mitochondrial replacement techniques, maternal spindle transfer and pronuclear transfer, have been developed but the idea behind mitochondrial replacement is far from new. Researchers started performing pronuclear transfers in mice back in the 1980s. More recently, research has been conducted on maternal spindle transfer in rhesus macaques, producing five healthy monkeys. Currently, a research team at Newcastle University has been performing pronuclear transfers on healthy, fertilized human eggs. To date they have performed around 100 successful transfers. (Callaway, 2014)

While experimental treatment could offer those mothers who are carriers of abnormal mitochondria the possibility of having a healthy child, ethical and legal controversy could prevent this procedure from moving forward to the clinical trial phase. In the UK, the law prohibits any procedure involving the modification of a person’s DNA. This means that although the described procedure could be ready to go to clinical trial in 18-24 months, the law first would have to be modified for this to occur. According to an article published in The Washington Post, in February of this year a US FDA expert advisory panel held a two-day meeting to discuss the issue. Although the FDA has not yet released official comments, the advisory panel recommended that a public hearing be held.

Most of the arguments against the use of this procedure in humans involve some sort of slippery slope scenario: allowing mitochondrial replacement will inevitably lead to cloning, designer babies, and other horrors worthy of a dystopian fiction novel. These arguments easily can be countered by referring to the scientific facts underlying mitochondrial replacement. First, as previously pointed out, mtDNA is distinct from chromosomal DNA, and as such mtDNA is not responsible for a person’s genotypic or phenotypic characteristics. Second, mitochondrial replacement does not involve genetic modification. No individual genes are being altered or replaced. What are being transferred from donor to recipient are cellular organelles. So in a way, it is a form of micro-organ donation, and not genetic modification.

A more interesting set of arguments against mitochondrial replacement raises questions pertinent to research ethics, for example, those related to risk/benefit ratio, and boundaries between research and clinical practice. On the surface the risk/benefit analysis does not seem too problematic. To begin with, extensive preliminary research has been conducted successfully on animal models; moreover, no other treatment options are currently available for mitochondrial disease patients. The next logical step would be to conduct Phase 1 clinical trials. A report from the Nuffield Council on Bioethics seems to agree with this approach, stating: “subject to appropriate oversight, it is ethical to gather further information about these techniques, in order that they can be considered for treatment use.” (Nuffield Council on Bioethics, 2012) However, the risk/benefit analysis may not be so simple, considering that the procedure being tested not only will affect the involved subject, but also potentially the subject’s future offspring. We may be facing a whole new set of ethical questions related to intergenerational risk/benefit analysis.

Even more ethically problematic than the risk/benefit issue is the matter of establishing effective boundaries between research and clinical practice. In this case there is little distinction to be made; consenting subjects would be enrolling in a trial that offers them the only option to bear a healthy child. While it may be clear to those subjects that they are in fact participating in research, due to the nature of the procedure as well as to the desired outcome (a healthy baby) it is plausible to think that researchers and clinicians will work together very closely to monitor the process, thereby blurring, more than usual, accepted boundaries between research and practice.

These and other important ethical questions should be seriously considered, but in and of themselves they should not prevent mitochondrial replacement research from moving forward, especially when serious suffering and untimely death can be prevented. What is unnecessarily distracting is the moral panic related to the possibility of this research leading to genetic modification of chromosomal DNA. Hopefully, for now that panic will remain confined to the pages of science fiction novels.

References:

Callaway, E. Reproductive medicine: the power of three. Nature 509 (7501). May 21, 2014. http://www.nature.com/news/reproductive-medicine-the-power-of-three-1.15253#/video

Clark, Stuart. Genetic treatment using three-parent embryo may be ready in two years. The Guardian. Published online June 3, 2014.
http://www.theguardian.com/science/2014/jun/03/genetic-treatment-mitochondrial-replacement-three-parent-embryo-dna-law

Eunjung Cha, Ariana and Sandhya Somashekhar. FDA panel debates technique that would create embryos with three genetic parents. The Washington Post. Online, February 25, 2014. http://www.washingtonpost.com/national/health-science/fda-panel-debates-technique-that-would-create-embryos-with-three-genetic-parents/2014/02/25/60371c58-9e4d-11e3-b8d8-94577ff66b28_story.html

Mitalipov, S. et al. Limitations of Preimplantation Genetic Diagnosis for Mitochondrial DNA Diseases. Cell Reports, 7 (4): 935 – 937. May 22, 2014.

Nuffield Council on Bioethics. Summary of report. Novel techniques for the prevention of mitochondrial DNA disorders: an ethical review. June 12, 2012. Available online: http://nuffieldbioethics.org/sites/default/files/Mitochondrial_DNA_disorders_summary_web.pdf

list-cropMonica List, DVM, MA, is a doctoral student in the Department of Philosophy at Michigan State University. She earned a veterinary medicine degree from the National University of Costa Rica in 2002, and an MA degree in bioethics, also from the National University, in 2011.

Join the discussion! Your comments and responses to this commentary are welcomed. The author will respond to all comments made by Thursday, July 10, 2014. With your participation, we hope to create discussions rich with insights from diverse perspectives. You must provide your name and email address to leave a comment. Your email address will not be made public.

Center faculty travel to Atlanta to present at 15th Annual ASBH Meeting

asbh logoThe 15th Annual American Society for Bioethics and Humanities Meeting was held October 24-27, 2013, in Atlanta, GA. Several of our faculty members attended and presented on various topics.

“Autonomy’s Child: Exploring the Bounded Warp and Woof of Shared Decision-making”bogdanlovis-crop-facKelly-blake
By Elizabeth (Libby) Bogdan-Lovis and Karen Kelly-Blake

Shared decision-making is commonly cited as a clinical encounter ideal, yet current assessments suggest that multiple barriers impede its full implementation. To explore some of those barriers we examined obstacles to shared decision-making surrounding the place of birth, where the available clinical evidence on best practice is ambiguous. Disagreement over interpretation of the available evidence, presentation of the relevant information, maternal and fetal rights and responsibilities and physician rights and responsibilities commonly confound the interaction. This presentation examined shared decision-making complexities over who is, and who should be, the authorized decision maker for the mother-baby dyad when there is profound disagreement over interpretations of risks as well as determination of best interests. This presentation usefully highlighted difficulties in robust shared decision-making implementation.

“The e-portfolio as a teaching approach: fostering reflective thinking in interdisciplinary bioethics programs”
list-cropPoster by Monica List

Bioethics is arguably defined as an interdisciplinary field. However, how this interdisciplinarity is expressed in the teaching of bioethics depends strongly on the nature and purpose of each particular program. In 2012, the Specialization in Bioethics, Humanities, and Society (BHS) at Michigan State University launched a 1 credit, fully online e-portfolio course. One of the main objectives of the course was to provide BHS students with an opportunity to integrate, and critically reflect on, the knowledge and experiences gained through their specialization coursework. In this first offering of the e-portfolio course, 10 undergraduate students from 9 different majors conducted an analysis of the case of STD research in Guatemala from 1946 to 1948, using a study guide prepared by the Presidential Commission for the Study of Bioethical Issues. This experience provided valuable information on the benefits and shortfalls of using e-portfolios in interdisciplinary teaching and assessment in bioethics programs at the undergraduate level.

“Parsimonious Care: Penurious Promises or Just Prudence?”
By Leonard M. Fleck, Ph.D.Leonard Fleck

The American College of Physicians generated a small media firestorm with the 6th edition of their Physicians Ethics Manual wherein they recommended physicians should provide “parsimonious care” to their patients for reasons of both equity and efficiency. Some critics noted that parsimony carries the connotation of stinginess; other critics maintained that parsimonious care represented disloyalty to the best interests of patients.

Dr. Fleck defends the claim that parsimonious medical care is presumptively morally permissible if the following conditions are met: (1) We have limited resources to meet virtually unlimited health care needs. (2) As a society we are failing to meet numerous just claims to needed health care because we squander resources on the very well- insured. (3) Objective medical grounds exist for believing a specific intervention will likely yield little benefit. (4) Those objective medical grounds are captured in evidence-based, expert-derived practice protocols congruent with the core values of medicine. (5) The parsimonious practice protocols are public and transparent and legitimated through a process of rational democratic deliberation. (6) Savings achieved through parsimonious practices are captured and redistributed toward meeting higher priority health care needs. (7) High-cost patients are not discriminated against; instead their health care needs are met as efficiently as possible with effective health care interventions, even if those interventions are not cost-effective. The goal is not maximal parsimony but equitable parsimony.

“Stewardship Model of Biobanking: Ethical Challenges are Systems Challenges”
mongoven smallPoster by Ann Mongoven, Michigan State University and Stephanie Solomon, St. Louis University

Although there is currently great interest in increasing informed consent for biobanking, informed consent for biobanking is incoherent. Biobank recruits asked for biosamples cannot weigh risks and benefits of future unknown research. This poster argued that the use of advance directives and surrogate decision-makers in clinical medicine offers a model for biobanking ethics. Patients considering future unknown medical scenarios can express relevant values through advance directives, and appoint a surrogate decision-maker. In practice, advance directives are the most effective when they are neither too vague nor too specific, and when they focus on general values rather than specific treatment choices—like the popular “Five Wishes” advance directive. They are also more successful when they are reinforced systematically within a health system and community. Biobanks should develop an analogue of the “Five Wishes” that is neither too vague (blanket consent) nor too detailed (tiered consent), that stresses relevant values rather than specific research choices, and that is formed by and forming of community engagement to support the biobank’s de facto surrogate role.

“Biobank or Biotrust?: Metaphor and the Ethics of Biobanking”
Poster by Ann Mongoven

Metaphors are word-symbols that are partially formative of the moral world. Because non-literal, all metaphors highlight some aspects of the moral landscape while obscuring others. Common metaphors used in biobanking ethics are often used unreflectively: biobank; specimen; donor; etc. For example, while “bank” aptly signals a repository, “bank” is a commercial metaphor. It may not well capture potential public purposes of biobanking. “Donor” implies intent, but many biobank participants are unaware that their tissue has been banked or is being used in research. They may be more “conscript” than “donor.” Metaphorical analysis enables a two –way critique, exploring the relationship between the language used for biobanking and actual institutions or practices. The poster argues that many commonly-used metaphors for biobanking are ethically distorting; that we should experiment with other metaphors; and that given the complexity of this new enterprise we may need multiple metaphors to describe it and resist distortions.

The “Jolie Effect”: Managing Awareness, Risk, and Personal Choices

Bioethics-in-the-News-logoThis post is a part of our Bioethics in the News series. For more information, click here.

By Monica List, DVM, MA

On May 14, actress Angelina Jolie published an op-ed article in the New York Times (Jolie, 2013). In this article, entitled “My Medical Choice”, Jolie narrates her experience of going through genetic screening for the BRCA-1 gene mutations,1 and after testing positive, and in light of her family history of breast cancer, deciding on a bilateral prophylactic mastectomy (BPM) followed by breast reconstruction.

A deluge of media attention quickly followed. Jolie’s NYT op-ed received 1,712 reader comments, a significant number, compared to, for instance, 170 reader comments for the editorial on the Boston Marathon bombings published by the NYT Editorial Board within hours of that event. The reports and opinions that followed Jolie’s article were both positive and negative, but there is fair certainty that the vast majority approved of, and even praised both Jolie’s decision to have a BPM, and her decision to go public. Supporters commended the actress not only for publicly sharing such a personal decision, but for bringing even more visibility to the issue of breast cancer.

The less numerous critical comments focused on questions such as whether or not her decision was medically warranted, and the potential impact that her public disclosure may have on services and procedures such as genetic screening, genetic counseling, BPM, and contralateral preventive mastectomy (CPM). An additional point of concern raised by Peggy Ornstein in an article also published in the NYT (Ornstein, 2013), is that while fear of cancer is legitimate, the ways in which information about breast cancer prevention, screening, and treatment is packaged and sold to us can result in disproportionate fear and anxiety, which not only has a negative effect on women’s quality of life, but can lead to radical decisions that are not always medically necessary. Todd Tuttle, lead author of a study on CPM, refers to this phenomenon as “breast cancer over-awareness”; in her NYT article, Ornstein quotes him as saying “It’s everywhere. There are pink garbage trucks. Women are petrified.”

In Jolie’s case, the decision to undergo mastectomy seems to be medically justified – she carries the defective BRCA-1 gene, and had already lost her mother to breast cancer in 2007, at the age of 56. Shortly after the publication of her op-ed, she also lost an aunt to the same disease. However, as Norah Essali points out in the “Students 4 Best Evidence” blog, there are reasons to think that the decision may not be as unequivocal as it seems; even for a high-risk patient such as Jolie, the choice to undergo BPM is more based on risk assessment than on actual evidence (Essali, 2013). Essali’s point is supported by a systematic review published by Lostumbo (Lostumbo, et al., 2010), which analyzes data from 39 observational studies on women who underwent either BPM or CPM. The authors conclude that although BPM may reduce the incidence of breast cancer and improve survival in women with high breast cancer risk, further studies are required to obtain more conclusive evidence. In the case of CPM, the authors straightforwardly claim that there is simply insufficient evidence to prove that CPM improves survival. They suggest that the best way to gather this evidence would be through randomized clinical trials (RCT), which are sorely lacking for most if not all of the approaches to breast cancer risk assessment and management.

While the issue of using randomized clinical trials raises important ethical questions, perhaps it is necessary to take a step back, and think more broadly about the ethical dimensions of breast cancer risk assessment and management. If, as Angelina Jolie states in her article, opting for BPM, or any other form of breast cancer prophylaxis or treatment is a personal choice, and, if Todd Tuttle is correct in saying that we are in the midst of a breast cancer over-awareness epidemic (Ornstein, 2013), then improving the ways in which individual patients can make informed choices should be a high priority on the breast cancer research agenda, and perhaps gathering more and better evidence in some areas is not enough.

While it is generally accepted that scientific uncertainty is unavoidable, there is also a tendency to believe that as the body of evidence for a particular issue grows, uncertainty will tend to decrease, and that this will allow for better risk management, and ultimately, a reduction of risk for that particular issue. However, as Silbergeld points out, there are different kinds of scientific uncertainty; systematic uncertainty arises from limitations related to the type of knowledge being sought, in this case, factors that increase the risk of breast cancer, and actions to decrease that risk (Silbergeld, 1991). Specific uncertainty, on the other hand, is related to limitations of the protocols, experimental designs, and inference processes that we use to turn data into scientific evidence.

For the issue of breast cancer risk, clearly there are both systematic and specific uncertainties. More importantly, no amount of evidence will ever address the uncertainty that stems from each woman’s individual combination of risk factors, and also importantly, her values and actions with respect to those factors. According to Prado and colleagues (Prado, 2010), 75% of breast cancer patients are classified as “sporadic”, meaning that they have no family history of breast cancer, and no proven genetic risk. These authors also call attention to the fact that while models for breast cancer risk assessment take into account multiple factors, they have poor or no capability to predict individual risk.

My point is not to say that any quest for better evidence for breast cancer prevention, diagnosis, and treatment is useless in the face of uncertainty. Rather, I mean to call attention to the importance of the role of values not only in patients’ individual decisions about healthcare, but also at the scientific and policy-making levels. In 2010, federal funds for breast cancer research amounted to $631 M;2 meanwhile, a report published in the NYT in February of this year questions research priorities, arguing that priorities failed to include, for instance, prevention oriented research, as well as research on environmental risk factors (Grady, 2013).

Certainly, for women like Jolie, who carry the BRCA-1 or BRCA-2 mutations, being able to know that they are at a high risk for breast cancer before it even develops is a life-saving advantage, and a choice like PBM is one they can make (provided that they have financial access to the necessary medical care). However, the number of women who are able to know their risk for breast cancer, and make a choice about it, and more importantly, the number of women who are able to act on that choice, needs to increase exponentially if our war on breast cancer is going to move on beyond what Peggy Ornstein refers to as “a feel good” enterprise. A more careful examination of the values that influence and shape research priorities, as well as research design and implementation is an important step in this direction.

1 For more information on BRCA-1 and BRCA-2 genetic testing, visit: http://www.cancer.gov/cancertopics/factsheet/Risk/BRCA

2 http://www.cancer.gov/cancertopics/factsheet/NCI/research-funding

References:

list-cropMonica List, DVM, MA, Monica List is a doctoral student in the Department of Philosophy at Michigan State University. She earned a veterinary medicine degree from the National University of Costa Rica in 2002, and an MA degree in bioethics, also from the National University, in 2011.

Join the discussion! Your comments and responses to this commentary are welcomed. The author will respond to all comments made by Wednesday, June 26. With your participation, we hope to create discussions rich with insights from diverse perspectives.

You must provide your name and email address to leave a comment. Your email address will not be made public.

BHS Advisor Monica List spoke at the Society for Literature, Science, and the Arts’ 2012 meeting

Monica List, the advisor for the Specialization in Bioethics, Humanities and Society, gave a lecture entitled, Fear of the animal Other: a historical journey, at the 26th Annual Meeting of the Society for Literature, Science, and the Arts.

The meeting, which explored the theme Nonhuman, took place from September 27-30 in Milwaukee, Wisconsin.

Description: From its inception, SLSA has distinguished itself from other humanistic scholarly societies through its sustained interest in the nonhuman. Not only does SLSA concern itself with nonhuman actants like tools, bodies, networks, animals, climate, media, or biomes but it is also engaged with such nonhumanistic academic disciplines as mathematics, computing, and the natural and physical sciences. SLSA 2012 takes up the “nonhuman turn” that has been emerging in the arts, humanities, and social sciences over the past few decades.

For more information, please see the SLSA homepage.