Defining The Spectrum of “Normal”: What is a Disease?

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

By Jennifer Carter-Johnson, JD, PhD

The world of Gattaca once seemed a faraway place where some babies had genetic defects corrected before birth resulting in two classes within society. However, a recent report that a Swedish scientist, Fredrik Lanner, has begun to edit the genome of healthy embryos has made the movie seem ever more probable. This report follows on the heels of reports from China that two teams have edited non-viable embryos to correct for a blood disease and to make the embryos more resistant to HIV infection. Embryo gene editing experiments have also been approved in the UK, and while the U.S. National Institutes of Health refuse to fund such experiments, some state funding agencies are beginning to consider it. The eventual goal of these experiments is to correct genetic diseases at conception, saving people from living lives with Huntington’s disease or with genetic predispositions for heart disease or breast cancer.

Part of the DNA sequences from the human genome

Image description: a page of a book displays part of the DNA sequences from the human genome. Image source: Flickr Creative Commons.

There are a myriad of concerns connected with the editing of human embryos as discussed in the reports mentioned above. Usage of embryos for any research is controversial since some believe that embryos should have rights equal to a born person. Beyond the basic question surrounding all embryonic research, scientists have questioned whether we should be creating designer babies, citing concerns that the use of embryo editing might inadvertently create new diseases. Additionally, access to the technology might be limited due to the high cost, giving rise to a situation where those who can afford to edit their child’s genome will have the advantages of selecting for children who are highly intelligent, highly athletic and low health risks. In a society where class inequalities are becoming ever more pronounced, use of embryo editing could exacerbate the problem by unevenly allocating not only resources but also abilities to those with money.

Perhaps one of the most difficult questions to be answered relates to which genes should be modified. As an abstract concept, using embryonic gene editing to cure a disease is more palatable to many than choosing eye color and height, but identifying a “disease” may be more complicated than it looks. As researchers identify the genetic basis for conditions that impact a person’s health, it forces us to ask if those conditions are diseases or merely a variation on the normal of human existence.

Some mutations that increase susceptibility to disease are actually beneficial mutations in the response to other diseases. The mutation that leads to sickle cell anemia protects against malaria in people who only have one copy of the mutation. Mutations in the T cell receptor CCR5 make a person more susceptible to psoriasis and infection by West Nile Virus but protect against HIV and smallpox infections. Obviously, we don’t know all the mutations that are beneficial against diseases, merely that some people get more or less sick when confronted with certain pathogens. It is possible that super-healthy, specifically-designed children would be ill-equipped to defend against an emerging disease where some members of a genetically diverse population would have protection.


Image description: a bright blue frame surrounds an artist’s embroidered rendering of the human chromosome map. Image source: Flickr Creative Commons.

Other disease-causing genetic mutations may also shape traits that society views as a positive. For instance, some research links the genetic predisposition for bipolar disorder with high IQ and enhanced creativity. Would the individual or society benefit from ameliorating the former at the cost of decreasing intelligence and creativity? Conversely, if the intelligence and/or creativity are genetically linked to bipolar disorder, well-meaning parents, seeking to increase the potential of their child, may exacerbate a genetically related mental illness.

Finally, one person’s disease is another person’s normal, community and heritage. Deaf parents often resist cochlear implants in their deaf children. These parents don’t view deafness as a disability but rather a community with its own language and customs. This view stands in contrast to the views of many in the hearing community who view deafness as a defect to be cured. Indeed, most deaf people function well in both deaf and hearing areas of society. If embryonic gene editing became a norm, deafness might be “fixed” – a process that some in the deaf community would liken to genocide. Similarly, many in the autistic community refuse to define themselves as having a disease. Not too long ago, homosexuals were considered mentally ill, a view that has become anathema as research into and acceptance of alternate views of sexuality have grown. Understanding the genetic underpinnings of autism and homosexuality would open them to a similar debate about embryo editing.

Some variations from normal are not diseases, they are merely differences. Some diseases or predispositions to diseases mask a greater benefit to the person or to society as a whole under certain conditions. Still others are life threatening diseases that carry little to no benefit as compared to the harm. We don’t always recognize these alterations for what they are, which makes determining which genes to modify a very difficult task as embryo editing becomes more feasible.


Jennifer Carter-Johnson, JD, PhD, is an Associate Professor of Law in the College of Law at Michigan State University. Dr. Carter-Johnson is a member of the Michigan State Bar and the Washington State Bar. She is registered to practice before the U.S. Patent and Trademark Office.

Join the discussion! Your comments and responses to this commentary are welcomed. The author will respond to all comments made by Thursday, November 3, 2016. With your participation, we hope to create discussions rich with insights from diverse perspectives.

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Center faculty present at 18th Annual ASBH Meeting

asbh logoThe 18th Annual American Society for Bioethics and Humanities Meeting was held October 6-9 in Washington, DC. Center faculty Libby Bogdan-Lovis, Karen Kelly-Blake, Devan Stahl, and Len Fleck presented at the conference. The post below details each researcher’s presentation in their own words.

bogdanlovis-crop-facKelly-blakeLibby Bogdan-Lovis, MA
Assistant Director, Center for Ethics and Humanities in the Life Sciences
In concert with research collaborators Karen Kelly-Blake, Nanibaa’ Garrison, (Seattle Children’s Hospital) and Faith Fletcher (University of Illinois Chicago), we presented “Medicine’s Mirror Image Agenda: Covert Costs of Racial/Ethnic Concordance in the Medical Workforce.” Our project is supported by the contributions of research assistants Brittany Ajegba (MSU College of Human Medicine student), Nichole Smith (Vanderbilt premedical undergraduate), and Morgann Brafford (MSU psychology/anthropology undergraduate).

Our team reported results of a 2000-2015 scoping literature review to examine presumed benefits of matching underrepresented minority (URM) physicians with patients sharing similar race/ethnic identities. In our analysis we considered the nature of medical workforce policy strategies. We reported that the most frequently cited rationales for increasing the URM medical workforce were service commitment and enhanced physician-patient relationship. The primary strategy for achieving this goal was pipeline programs. We argued that even though URMs provide a substantial proportion of medical care to the underserved, and quite possibly such workforce patterns reflect focused altruism to serve one’s own, parity and service rhetoric may covertly shape the professional lives of Native American, African American, and Latino underrepresented minority (URM) physicians. We questioned whether those strategies might not unevenly affect URM physicians, selectively placing service expectations not similarly placed on their non-minority physician colleagues. We concluded by explaining that social justice of the profession entails equitable sharing of responsibility to meet the needs of the underserved and that social justice in the profession demands that URM physicians deserve an unfettered future and should not be viewed as instruments to fix societal structural determinants of health.

stahl-crop-2015Devan Stahl, PhD
Assistant Professor, Center for Ethics and Humanities in the Life Sciences
This year at ASBH I had the opportunity to organize and lead two sessions. First, as the co-leader of the Bioethics and Christian Theology Affinity Group, I helped to organize a panel which featured Dr. Lydia Dugdale’s new book, Dying in the Twenty-First Century: Toward a New Ethical Framework for the Art of Dying Well. Dr. Dugdale’s presentation was followed by two responses by Dr. Paul Scherz and Dr. Mark Cherry. The session was well-attended and generated much conversation.

The next day, I helped to lead a workshop: “Responding to Those Who Hope for a Miracle: Conceptual Resources and Practical Responses for Clinical Ethicists” with Drs. Trevor Bibler, Myrick Shinall and Ashley Stevens. The workshop began with an overview of the theological concepts that frequently accompany the beliefs of patients and families who hope for a miracle. We then presented case studies to show four ways patients employ the term “miracle” as they struggle to understand God and strategies for responding to these four types of invocators. We lead breakout sessions to help attendees identify the types of miracle language discussed and best practices for responding to each. The session was very popular, which unfortunately meant several people could not fit in the space provided. Positively, the workshop had a lot of good discussion and participation by attendees.

fleck-crop-facLen Fleck, PhD
Professor, Center for Ethics and Humanities in the Life Sciences
I presented Saturday morning at ASBH. The title of my presentation was “Last Chance Therapies: LVAD and a Heart Transplant?” The ethical issue I was addressing here is related to cardiac transplantation. Only about 2200 hearts are available for transplantation each year in the US, so this is an absolutely scarce resource. Dick Cheney, former Vice-President, after five heart attacks (starting at age 37) and every imaginable cardiac intervention to sustain his life, was diagnosed as being in late-stage heart failure in late 2010. He had surgically implanted at that time a Left Ventricular Assist Device [LVAD] to maintain marginal heart function. He almost died in surgery, spent 40 days in the ICU, and was listed for a heart transplant. He received that transplant at age 71 in 2012. Many will argue (including me) that Cheney had had his “fair innings,” and that a younger person, a bit further down on the transplant list, should have gotten that transplant. But that person died instead (the “unknown” patient, and without any monument).

Click through to continue reading about Dr. Fleck’s research

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Is External Pressure Really the Key Objection Against Neurosurgery for Imprisoned Psychopaths?

cabrera-crop-2015A commentary by Center Assistant Professor Dr. Laura Cabrera was recently published in AJOB Neuroscience, titled “Is External Pressure Really the Key Objection Against Neurosurgery for Imprisoned Psychopaths?”

Dr. Cabrera addressed two main issues contained in Dietmar Hübner and Lucie White’s argument found in their research article “Neurosurgery for Psychopaths? An Ethical Analysis.” The first one regarding the claim that employing deep brain stimulation (the technique that Hübner and White focused on) for forensic purposes is still “in an early phase of design and discussion.” The second addressing Hübner and White’s claim regarding voluntary informed consent. In particular, Dr. Cabrera argues that the issue of external pressure is not a key objection to support that psychopaths’ informed consent is not voluntary.

Dr. Cabrera’s commentary is available to read online through Taylor & Francis Online.

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Dr. Stahl presents at medical humanities, pediatrics events

stahl-crop-2015Center Assistant Professor Dr. Devan Stahl recently attended the Sixth Annual Western Michigan University Medical Humanities Conference, held September 15-16 in Kalamazoo. Dr. Stahl planned and moderated a panel and workshop on the use of fine art in medicine. Presenters discussed how fine art can help providers to understand illness narratives, can help highlight the ethical dilemmas of medical technologies, and can be used to help medical students learn to navigate ambiguity and communication in their future practice.

Dr. Stahl also presented at last week’s Society of Michigan Neonatologists annual conference, held in East Lansing. In her talk, “Medical Interventions for Children with Trisomy 18: How Far Should We Go?,” Dr. Stahl discussed how to navigate the ethical and medical complexities surrounding decisions for the treatment of infants with trisomy 18. She discussed strategies for interacting with families who request aggressive treatment for their child, and how to work productively with other health care providers when managing the care of a child with trisomy 18. The presentation produced a lively and energetic discussion with the audience.

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How did an OB-GYN in Puerto Rico become a key architect of the first birth control pill?

bbag-icon-decChoosing to Test: Dr. A. P. Satterthwaite and the First Birth Control Pill Clinical Trials in Humacao, Puerto Rico

Event Flyer

How did Adaline Pendleton Satterthwaite, an obstetrician-gynecologist (OB-GYN) working at a Protestant mission hospital in Puerto Rico, become one of the key architects of the first birth control pill? In 1952, Satterthwaite left the continental United States and went to Puerto Rico to work as an OB-GYN at Ryder Memorial Hospital in Humacao. She continued her work there through the early 1960s, but in 1957 she took on an additional job as Director of Family Planning Clinic and Research in Contraceptive Methods. In this capacity, Satterthwaite oversaw clinical trials of G.D. Searle & Co.’s Enovid, the first Food and Drug Administration approved oral contraceptive. This talk will examine Satterthwaite’s personal and professional reasons for bringing the trials to Humacao, Puerto Rico and demonstrate her central, if understudied, role in the development of Enovid.

oct19-bbagJoin us for Kathryn Lankford’s lecture on Wednesday, October 19, 2016 from noon till 1 pm in person or online.

Kathryn Lankford is a doctoral student in the Department of History at Michigan State University. She is broadly interested in the histories of medicine and science, gender and sexuality, and empire in the United States and Latin America. Specifically, Kathryn’s current research examines clinical trials of contraceptives in Puerto Rico during the mid-twentieth century. Before entering the PhD program in history at MSU, she received a B.S. in Biology from the University of West Georgia.

In person: This lecture will take place in C102 East Fee Hall on MSU’s East Lansing campus. Feel free to bring your lunch! Beverages and light snacks will be provided.

Online: Here are some instructions for your first time joining the webinar, or if you have attended or viewed them before, go to the meeting!

Can’t make it? All webinars are recorded! Visit our archive of recorded lectures. To receive reminders before each webinar, please subscribe to our mailing list.

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Dr. Cabrera presents in Ireland at ‘Algorithmic Brains’ workshop

cabrera-crop-2015Center Assistant Professor Dr. Laura Cabrera recently traveled to Galway, Ireland to participate in the workshop ‘From Algorithmic States to Algorithmic Brains,’ held at the National University of Ireland, Galway on September 22-23, 2016. Dr. Cabrera spoke on “Neuroenhancement and Human Values: How they Affect Each Other.”

Abstract: The past decade has seen a rise in the use of different technologies aimed at enhancing cognitive, affective and social domains of normal healthy individuals. Even though the role of human values in the ethical debate is acknowledged, it has not been widely explored in how values are affected by neuroenhancement. More than often, the little discussion of values within the enhancement debate has predominantly focused on just a few values, such as safety, peer pressure, and authenticity, and not much has been discussed in terms of social and political values. Values are not only likely to be affected by neuroenhancement practices; they also play a crucial role in defining the type of interventions that are likely to be undertaken.

After giving an overview of what human values are and why they matter, Dr. Cabrera explored the way values affect and are affected by enhancing cognitive, affective and social abilities, providing some examples. Dr. Cabrera concluded by suggesting that a social responsibility framework could help bridge the tensions underlying the interplay of values and neuroenhancement practices.

The workshop featured international researchers, bringing different perspectives to the discussion: from blockchain, robots and AI, to moral enhancement and biohacking.

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Disability and the Decisional Capacity to Vote

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

By Devan Stahl, PhD

When Voting Rights Are Barred
With upcoming elections only weeks away, many Americans with disabilities will be barred from voting as a result of state competency and guardianship laws.

Eager to cast his vote in the November elections, David Rector has once again had his voting rights denied by a judge in the Superior Court in San Diego, California. In 2011, Rector suffered brain trauma that left him unable to speak or walk. At that time Rector’s fiancée was appointed to be his conservator and a judge ruled his brain injury disqualified him from voting. According to Rector’s fiancée, Rector avidly follows the news and is informed on political issues. Rector cannot speak, but he uses an eye tracking communication device and can read and comprehend.

Rector’s case is another in a long line of cases where persons who can and want to vote have been disenfranchised as a result of a disability. After protests, a complaint filed by the Disability and Abuse Project, and a DOJ investigation, Governor Jerry Brown signed Senate Bill 589, which changed the standard for voting from the person’s ability to fill out a voter registration document to the person’s ability to express a desire to participate in the voting process. The new law went into effect January 1, 2016, and many presumed Rector would have his voting rights restored. On August 29, 2016, Rector met with a judge and used his electronic eye tracking device to declare “I, David Rector, want my voting rights restored immediately.” The judge, however, was not convinced, saying she needed more evidence that Rector wishes to vote. Even with the upcoming presidential election, there is still no plan by elected officials to reinstate voting rights to the approximately 32,000 conservatees who are currently restricted from voting a result of the original law.

The Current Landscape of State Laws


Image description: Text on a blue background reads “feel the power of the disability vote.” The words “feel the vote” are in white, and the words “the power of disability” are in red. Image source: Flickr Creative Commons.

Rector’s case is hardly an anomaly. Only 11 states do not have some type of law which disqualify persons from voting because they have a mental disability, although most require a court to determine a person does not have the capacity to vote. In many states, however, individuals with guardians or conservators are routinely barred from voting. A study done by a lawyer working for the Disability and Abuse Project found nearly 90% of persons in L.A. County with conservators had been disqualified from voting. In some states, persons with mental disabilities are asked a series of questions to prove they understand the political landscape, such as knowing who the current governor or mayor is or even why they want to vote or how they will vote on particular issues.

Persons with disabilities, like other minority groups, have historically had their right to vote infringed. The Voting Rights Act allows persons who cannot read or write or have any disability to receive assistance from any person of their choice in order to vote and prohibits tests from being used to deny people the right to vote. Provisions of the Americans with Disabilities Act also ensures people with disabilities have the right to vote and reasonable provisions must be in place to allow them to do so. Requiring persons to have the capability of filling out a voter registration form or answer certain political questions amounts to a reinstitution of the literacy test. In many states, persons with disabilities are being disenfranchised.

Supporters of laws that limit persons with guardians or conservators from voting argue such laws limit voter fraud, because persons with disabilities are vulnerable to exploitation by their caregivers who may pressure them to vote a certain way. There is little data to suggest this is happening and the assertion is generally demeaning when applied to all persons with mental disabilities or guardians. Unfortunately, there are still pervasive stereotypes that persons with mental disabilities cannot express preferences or are universally incompetent.

The appointment of a conservator or guardian, and even the declaration of incompetency is not a measure of whether a person has the decision making capacity to vote. Conservatorships and guardianships help ensure persons have their basic needs, including health and safety, met. Persons with a wide range of conditions, including autism spectrum disorder, traumatic brain injury, and cerebral palsy are awarded guardians. Many persons have limited guardianship, which means they have someone, like a family member, help manage financial decisions, but are perfectly capable of voting and expressing political opinions.

Health Care Ethics and Capacity
In health care, it is common to speak of decision making capacity as the capacity to decide on a particular question or treatment. Capacity is never a universal declaration, rather it is an assessment given by a physician as to whether a person as the capacity to decide something in particular. Mental disability or cognitive impairment never automatically disqualify a person from making important medical decisions. Simply because a person does not have the capacity to make one kind of complicated decision does not mean he or she is barred from making other kinds of decisions.

Unfortunately, courts and laws are rarely so nuanced. Physicians, then, have an important obligation to speak up on such issues. Most physicians, particularly ones who work regularly with patients with intellectual and developmental disabilities, know their patients exhibit a wide range of competencies. The bar for the capacity to vote, as outlined in the Voting Rights Act, should be low. No tests ought to be given and no person should be required to answer a series of questions aimed at proving their political knowledge. Only those who are so incapacitated they are unable to express any sort of opinion should be prevented from voting. Persons like David Rector, Roberta Blomster, and Stephen Lopate who express a desire to vote, should never be denied. Just as with health care decisions, the burden should be on physicians or the courts to prove a person does not have the decision making capacity to vote, not on the person with the disability to prove they do. Those who want to vote should be able to vote, and our medical community should both support and fight for their right to do so.

Devan Stahl photoDevan Stahl, PhD, is an Assistant Professor in the Center for Ethics and Humanities in the Life Sciences and the Department of Pediatrics and Human Development in the Michigan State University College of Human Medicine.

Join the discussion! Your comments and responses to this commentary are welcomed. The author will respond to all comments made by Thursday, October 6, 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.

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