Narrative Ethics and the Black American Healthcare Story


Sign for the Lallie Kemp Charity Hospital with Clinics & Clinic Hours

Lallie Kemp Charity Hospital Segregated Hospital Sign

I am a firm believer that stories make up the human experience. They make us who we are and make the foundation of our worldview. They build and shape our communities. They tell stories of our wins and our losses – who we trust and don’t trust. To quote Alsdair MacIntyre, “I can only answer the question ‘What am I to do?’ if I can answer the prior question ‘Of what story or stories do I find myself a part?”. Narrative ethics values stories in the same way. In medical ethics, narrative ethics is an alternative to principlism that focuses on the importance of stories to morality and decision making. Storytelling is especially significant in African-American communities. Initially in African communities, storytelling via oral tradition was used to teach moral values and preserve family genealogies. However, during slavery it was used by the slaves to express themselves in a world that treated them as a bit more than animals. Charismatic, non-fiction works have impacted and reflected the values of African-American communities until present day. Under a narrative ethics framework, examining the stories of any community (African-American or otherwise) can give insight into the value systems and point-of-views of communities. Examining (though not making assumptions about) the value systems and point-of-views of communities creates a better healthcare system from the inside-out. The diversity of thought this examination facilitates can make healthcare more tailored to a community’s needs. In light of this, here are a few highlights of the African-American healthcare experience.

  • Segregation of Hospitals – Until the Civil Rights Act of 1964, hospitals in the United States could legally be segregated under Black Codes and Jim Crow laws. In 1959, 83% of northern hospitals and 6% of southern hospitals were integrated. In medical education, only 10% of northern hospitals and 6% of southern hospitals at the time took African-American residents and interns. However, some hospitals still practiced segregation in a more passive-agressive fashion. Some hospitals were integrated as long as review teams were in town to evaluate hospitals. Other hospitals would integrate restrooms, but would only give restroom keys to the white staff. It wasn’t until the passage of Social Security Act of 1965 that hospitals were forced to integrate permanently. This was because this Act required hospitals that receive federal funds to be compliant with Title IV of the Civil Rights Act.
  • Unethical Human Experimentation – Unethical human experimentation has been prevalent in Black communities since slavery began in the United States. The book The Immortal Life of Henrietta Lacks and my blog post, Slaves Can’t Give Informed Consent, both address various instances of this. One of the most infamous instances of racialized, unethical, human experimentation is the Tuskegee Syphilis Experiments. Spanning from 1932 to 1972, poor, rural, African American males were purposefully given syphilis without being told or given curative treatment – even after penicillin was invented. A lesser known incident was the nonconsensual, whole-body, radiation experiments, sponsored by the Department of Defense, done on black cancer patients from 1961 to 1970. These incidents further fueled feelings of mistrust of western medicine in African-American communities.
  • Historically Black Medical Schools – Howard University College of Medicine, Meharry Medical College, and Morehouse School of Medicine are historically black medical schools. Though founded at different points in history, these schools were founded with the purpose of educating and training African-Americans in medicine and the sciences. Howard University College of Medicine and Meharry Medical College were also founded at times when African-Americans were not accepted into most other medical schools. Not surprisingly, they actually trained most of the African-American physicians in the United States until the 1960s.
  • Home Remedies and Alternative Medicine among African Americans – Due to a history of disenfranchisement in health care systems, African-Americans have a fertile tradition of using home remedies. A 2015 study was published analyzing the use of home remedies among elderly African-Americans compared to elderly Whites. The study showed that African-Americans were more inclined to use home remedies, such as vinegar, garlic, and Vicks VapoRub, than their white counterparts. An earlier study also found similar information – elderly African-Americans were more inclined to use home remedies. Some participants gave accounts of their family members teaching them home remedies and how they had been passed down for generations. However, this study also explored how religion and spirituality coincided with the use of home remedies. Several participants said that they were more comfortable using home remedies because they were natural and given by God. There were also statements given about God’s authority over the body as a whole and how they trusted Him rather than physicians. These same participants were not particularly enthusiastic about taking traditional prescribed medications.

Granted, this is just a glance at the narrative of African-American communities. Some people may ask why these highlights are important – after all, these events are historic and its effects are archaic. However, here’s some perspective. Both of my grandmothers were born between 1920 and 1935 and they still tell me stories that line up with these highlights. I was born in the 1990s and when I had a cold, I received home remedies (raise a hand if you have heard some variant of “Vicks and charcoal can cure everything”). We are not as far removed as we think. This is a valid narrative of a group of people receiving care in this country. This is not to assume that every black person would have this experience. But this is a healthy baseline for examining how narrative ethics can affect African-Americans. Let me know in the comments below what your narrative or family’s narrative looks like!

Ready to listen,

The Neighborhood Bioethicist


Barbara P. MOss. “How the African American Storyteller Impacts the Black Family and Society.” Yale-New Haven Teachers Institute. Accessed August 11, 2017.
Brody, Howard, and Mark Clark. “Narrative Ethics: A Narrative.” Hastings Center Report 44, no. s1 (January 1, 2014): S7–11. doi:10.1002/hast.261.
Churchill, Larry. “Narrative Awareness in Ethics Consultations: The Ethics Consultant as Story-Maker.” Hastings Center Report 44, no. s1 (January 1, 2014): S36–39. doi:10.1002/hast.268.
II, Vann R. Newkirk. “America’s Health Segregation Problem.” The Atlantic, May 18, 2016.
MacIntyre, Alasdair. After Virtue. A&C Black, 2013.
Montello, Martha. “Narrative Ethics.” Hastings Center Report 44, no. s1 (January 1, 2014): S2–6. doi:10.1002/hast.260.
Tom Wilks. “Social Work and Narrative Ethics.” Brittish Journal of Social Work 35 (September 26, 2005): 1249–64.
“Tuskegee Syphilis Study | American History.” Encyclopedia Britannica. Accessed April 19, 2017.
“U.S. Hospitals and the Civil Rights Act of 1964.” Accessed August 11, 2017.
Washington, Harriet A. Medical Apartheid: The Dark History of Medical Experimentation on Black Americans from Colonial Times to the Present. Knopf Doubleday Publishing Group, 2008.

Why Charlie Gard’s Story Happened the Way it Did: A Legal Analysis

A few days before I published last week’s post, I saw the news of Charlie Gard’s death on CNN. It was really a solemn moment for me – bioethics can help you rationalize death, but you never quite get used to it. Infants and children, especially, leave my heart feeling a bit like a festering wound. Part of me questioned even writing about his story. The Gard family’s story became so public and polarizing that I was not sure if I wanted to contribute to the the figurative opening-of-the-shower-curtain on his parent’s grieving. But part of me also felt that this story needed to be through a different lens and clarified, while told with care. Between the Pope and President Trump’s involvement in Gard’s story, the true issues have become clouded. This was not a pro-life issue. Nor was this a political issue. This was a legal-bioethical issue that had more to do with the United Kingdom’s laws than our American sensibilities.

Charlie Gard was an 11 month old baby boy. Initially thought to be perfectly healthy, his parents, Connie Yates and Chris Gard, noticed that he was struggling to lift his head and to support his body. After taking him to the doctor, they found that Charlie had rare, genetic, disease called mitochondrial DNA depletion syndrome (MDDS). MDDS causes progressive muscle weakness, brain damage, and organ failure. By October 2016, he was lethargic, wasn’t breathing properly, and was transferred to Great Ormond Street Hospital in London, England. Yates and Gard later wanted to take him to the United States for an experimental treatment called nucleoside bypass therapy. Through a crowdfunding initiative, Yates and Gard raised the money needed for the treatment. The treatment has been tested on 18 patients in Spain and Italy with an 11% to 56% clinical effectiveness rate. However, it had not been tested on anyone with Charlie’s condition. It also had not been approved by the U.S. Food and Drug Administration, but under a compassionate use exemption (which allows for patients to pursue experimental treatment as a last resort) Charlie would have had access to treatment.

The Royal College of Pediatrics and Child Health gives guidance on legally and ethically terminating treatment of infants and children in the United Kingdom. Acceptable termination of treatment is allowed when 1) the child is brain dead, 2) the child is in a permanent vegetative state, 3) the child has no chance for life, 4) the child has no purpose (meaning the child could live with treatment but the impairment would make it unreasonable for them to have to endure it), and 5) if pursuit of treatment would cause unbearable pain and suffering for the child.  Under the United Kingdom’s Children’s Act 1989, the welfare of the child is the most important consideration in all decisions regarding a child. When there is a conflict in what is best for the child, the child must be given an independent voice in the matter. Though the United States’ legal system and laws are derived from the United Kingdom, this situation would be handled differently here. There is a best-interest standard in the U.S. However, U.S. Courts tend to lean towards parental judgement or ordering treatment. There have been exceptions such as the case of Terri Schiavo or In the Matter of Baby “K”, but the courts usually lean in the direction of treatment.

Here is how this affected the Charlie Gard case. Great Ormond Street Hospital and Charlie Gard’s parents did not agree on the best course of treatment for him. The hospital did not think it was the best decision to for Charlie to travel to the United States. They believed it was best to provide palliative care. Yates and Gard believed it was the best decision for him to go to the United States for the experimental treatment and asked the court to continue artificial ventilation until he could go to the United States. His parents also argued that legally, the standard given in the Children’s Act was not the appropriate legal test. Rather, the appropriate test would be whether the child would suffer significant harm as a result of the decision. Since there was a conflict between the parents and the physician, the decision legally had to be deferred to Charlie. Charlie was a baby and unable to make that decision for himself, so  he received an independent guardian. The guardian agreed, upon investigation, with the hospital that it was not in Charlie’s best interest to travel to the United States to receive the experimental treatment and that palliative care should be provided. Soon after the ruling, the neurologist who offered treatment to Charlie told his parents that it was too late for the treatment to work. His parents then withdrew their request for a changed court order and his death was announced on July 28, 2017. In the days following Charlie’s death, many public figures, such as Pope Francis and Prime Minister Theresa May, offered their condolences to the Gard family.

Complicated isn’t it? Some things, even when fully litigated, can end tragically. Legality, morality, and ethical issues are intertwined but still can be separate entities depending on circumstances and nuances. This case is a prime example of this. My sincerest condolences to the Gard family during this devastating time. I cannot imagine the pain you must feel.

Best Wishes,

The Neighborhood Bioethicist



Bhatia, Neera. Critically Impaired Infants and End of Life Decision Making: Resource Allocation and Difficult Decisions. Routledge, 2015.
“Charlie Gard Parents Announce Death of ‘Beautiful Boy.’” BBC News, July 28, 2017, sec. London.
CNN, Debra Goldschmidt and Vasco Cotovio. “Charlie Gard Brain Scan News Makes Parents Storm from Court.” CNN. Accessed August 2, 2017.
CNN, Susan Scutti. “Could Charlie Gard’s Case Happen in the US?” CNN. Accessed August 2, 2017.
Court, The Supreme. In the Matter of Charlie Gard – The Supreme Court. Accessed August 6, 2017.
———. “Permission to Appeal Hearing in the Matter of Charlie Gard – The Supreme Court.” Accessed August 6, 2017.
July 17, Sharon Begley Published, and 2017. “5 Things to Know about the Experimental Treatment Charlie Gard Might Receive.” Text.Article. Stat News, July 17, 2017.
Reporters, Telegraph. “Charlie Gard’s Parents Lose Supreme Court Fight to Take Him to the USA.” The Telegraph, June 8, 2017.
———. “Who Is Charlie Gard, What Is the Disease He Suffered from and What Happened in the Court Case?” The Telegraph, June 30, 2017.
“The Case Of Charlie Gard Divides Doctors And Parents.” Accessed August 6, 2017.
UK Supreme Court. “JUDGMENT OF THE UK SUPREME COURT IN THE CASE OF CHARLIE GARD, 19 JUNE 2017.” Accessed August 2, 2017.

Nia’s Nighttime Reading List

Fun Fact: I ruined my eyes by reading in the dark when I was six. I have worn glasses ever since.

I’ve always been an avid reader. Looking back at my younger self, I have to chuckle because no book is worth needing vision insurance for life. But here we are and Warby Parker exists for a reason. Since starting grad school, I have not had as much time to read anything other than textbooks. However, I have come back to reading ironically through the same avenue I started – at night. Reading leisurely in the evenings before bed has improved the quality my sleep and helped me decompress from a taxing day of law school. And before anyone slanders me for not learning from my mistakes, I just read with the light on now. Part of why I started this blog was to make bioethics more down-to-earth and accessible. Most people do not have access to boujee, posh, academic libraries and databases. What we DO have is Amazon and Barnes and Noble. So here are some easily accessible bioethics/healthcare books that I have either read or am reading. Hope you enjoy!

The Immortal Life of Henrietta Lacks by Rebecca Skloot. This is probably the most well known book on this list because HBO recently made it into a movie, staring Oprah Winfrey. The story starts in Baltimore, Maryland where Henrietta Lacks, a black woman treated in Johns Hopkins’ colored hospital wing, was diagnosed with cervical cancer. While receiving treatment, her cancerous cells were taken without her consent and used in medical research. What the physicians and researchers involved did not realize was that these cells would not die like the cells typically used for scientific research. They continued to multiply and were used to develop cures for many diseases – all without the knowledge or financial compensation of her family. The Immortal Life of Henrietta Lacks tells the true story of the Lacks family coping with multiple bioethics grievances and their consequences. It also takes care to show the effects of poverty, access, and racism on medicine. If you want to see the real-life reasons for why bioethics matters combined with a powerful and honest story, this is the book for you.

Medical Apartheid by Harriet A. Washington. This book was the main source for my blog post – Slaves Can’t Give Informed Consent (check it out here). Medical Apartheid is an anthology of the African-American people and their relationship with healthcare. Starting with slavery, it explains Black skepticism of western medicine and the crude and cruel methods used to give slaves medical “treatment”. Then it moves at a rapid fire pace to modern day – highlighting everything from little known human experimentation on blacks to population control through eugenics. This is a heavy read. Matter of fact, I was so distraught after the first chapter that I had to put down the book for a while to gather myself. Harriet Washington tells the very raw and very ugly truth. The clarity this book gives regarding attitudes about healthcare in minority communities alone is enough to leave a person shaken. If you have the stomach for Game of Thrones, you can probably get through this book. If not, you may want to take it in increments.

What Patients Say, What Doctors Hear by Danielle Ofri. Now THIS is one of my favorite books at the moment. I was first introduced to Danielle Ofri’s work at a bioethics event at Harvard Medical School. She was promoting What Patients Say, What Doctors Hear – her seventh book on bettering communication between physicians and patients, general physician health, and cultural competency. After about five minutes of listening to Dr. Ofri share the inspiration behind this particular book, I knew I had to make this purchase. This book pretty much embodies Dr. Ofri’s general vibe – sweet, genuine, and candid. It poses well-thought out questions about how patients and doctors interact and the importance of listening. The personal accounts given in this book are also relatable and insightful. As someone who studied some clinical ethics mediation, this book even made me ask myself how much do I listen and if I could do more. I would really recommend this book to medical students and young doctors. It is a well written primer on what patients are really looking for and where medicine extends beyond science. Serious yet funny, this is an easy, inspiring read.

HONORABLE MENTION: The Poverty of Privacy Rights by Khiara Bridges. I have not read this book yet because I have been waiting for this book to drop for months. BUT it recently released and I have read an excerpt to tide me over until I can pick up a copy from my library (yes I still borrow books from libraries). Khiara Bridges is a Professor of Law and Anthropology at Boston University. My nickname for her is The Goddess, because she literally does it all – down to being a professional ballerina on the weekend. The Poverty of Privacy Rights, her second book, examines how poverty can eclipse pregnant women’s right to privacy. With a specific focus on women in need of government assistance, it also poses to the reader questions regarding why poverty and government assistance are treated as cardinal sins. The book is still warm from the presses because it was just released a few weeks ago. If you are looking to support an accomplished, black academic – this is the book to get.

Seeing that Barnes and Noble has food and wine now, there’s no real excuse for you to not traipse over to your local store and check these books out. So if you are looking to study bioethics, are already in the field, or just want some interesting reads, pick one up. Links for all of the books mentioned, print and audio, are listed below. Let me know what you are reading in the comments – I’m always looking for a new book!

Happy Reading,

The Neighborhood Bioethicist



The Immortal Life of Henrietta Lacks – Amazon and Audible

Medical Apartheid – Amazon and Audible

What Patients Say, What Doctors Hear – Amazon and Audible

The Poverty of Privacy Rights – Amazon

In the Interim, Choose Life.

Choose life and speak life – these are phrases I grew up hearing while growing up in the black church. Usually, they are used as euphemisms. However, there is a literal meaning we could glean from the specific phrase “choose life” in the context of our nation’s healthcare crisis. The new healthcare bill is back this week *insert a sarcastic squeal of delight*. To be truthful, people of color probably will be adversely affected by any version of this healthcare bill. Minorities have always had issues with healthcare access and affordability. If an individual does not have health insurance but has a medical emergency, they will be in more than a pickle. The average congressman just does not live within that context. Part of combating these issues is healthcare activism and it is an important catalyst for change. However, while activism can turn society’s cogs and gears, there is still an interim period. There is still the day-to-day, 24 hours of highs and lows we all experience. If someone falls ill in the interim period of activism and tangible results  – they are quite simply screwed. Life does not stop, so literally – we have to choose life. And I would advocate that a tangible way to choose life is by taking preventative care more seriously.

Roper Insurance, a Colorado insurance company,  gives a pretty simple definition for preventative care:

“Preventive care is a type of health care whose purpose is to shift the focus of health care from treating sickness to maintaining wellness and good health. Preventive care occurs before you feel sick or notice any symptoms and is designed to prevent or delay the onset of illness and disease.” 

There are a couple of different ways to incorporate preventative care into your life. The easiest place to start is with healthy lifestyle – eating well, sleeping well, and exercise. According to the Center for Disease Control (CDC) , about half of all adults had one or more chronic health conditions in 2012.  Chronic diseases account for most of the deaths in the United States, with heart disease and cancer accounting for almost 46% of all deaths. However, the CDC goes further to show that risk factors for these diseases are poor diets, tobacco use, and obesity. Living an healthier lifestyle to combat potential diseases isn’t revolutionary. However, we forget how lifestyle changes are low budget ways (compared to hospital bills) to take control of your health. Are they 100% effective? No. But can it set you up for a fair shake at protecting your health? Yes. Sleep, better nutrition, and exercise are the foundation of avoiding sickness.

Preventative care in the medical sense can seem expensive, and in a lot of ways it is. But there are plenty of opportunities to get preventative work done with minimal dime. Free health screenings are a very helpful and useful option. Health screenings are tests that can identify diseases in an individual – preferably in the early stages. Corporations like CVS or Sam’s Club, hospitals, and local churches can have free health screenings regularly. Also, it is important to know where your local urgent care is. Urgent care facilities tend to offer basic medical services at a slightly lower price. You can save money on mental health services too. Usually, if you attend a college or university where you are required to have health insurance, therapy is free from the student health services department. Matter of fact, my current therapist is from my school – fabulous, super sweet, and free. There are also apps that you can download that give discounted health services. Talkspace is an app with online therapy service where you can text or call a therapist regularly for about $35 per month. There are free apps, like Headspace, for guided meditation as well.

I never needed a Trump presidency for me to understand how most of America felt about me as a black female. At minimum, on a good day, when the birds are singing and the sun is shining, majority peoples are not necessarily worried about my needs. Nor are they worried about my family and friends’ needs. Fine. But today, we have got to look out for our own. What African American social change groups, such as the NAACP and black community churches, understood is that we have to provide avenues for ourselves to be well. Poverty, disenfranchisement, and unequal footing may never go away. Access has improved, but there is a long way to go. So in the interim, we must choose life.




“Chronic Disease Overview | Publications | Chronic Disease Prevention and Health Promotion | CDC,” June 28, 2017.

“Do You Know Your Preventive Health Care Benefits?” Roper Insurance, June 1, 2016.
“ – Get Screened.” Accessed July 23, 2017.
“Heart Disease Prevention With Healthy Living Habits |” Accessed July 23, 2017.
“Preventive Care Benefits for Adults.” Accessed July 23, 2017.
Talkspace. “Talkspace | Online Therapy | Counseling Online | Marriage Counseling.” Accessed July 23, 2017.
“The Four Domains of Chronic Disease Prevention | Publications | Chronic Disease Prevention and Health Promotion | CDC.” Accessed July 23, 2017.
“WHO | Diet, Nutrition and the Prevention of Chronic Diseases <br> Report of the Joint WHO/FAO Expert Consultation.” WHO. Accessed July 23, 2017.


A Balm in Gilead: What Music can do for African American Health.

(Dedicated to the newest Choir of the World: the Oakwood University Aeolians. I am so proud of my HBCU Choir and what you all have accomplished!)

During this past week, I got the fabulous news that my alma mater’s premier choir, the Oakwood University Aeolians, won both the title of Choir of the World and Choral Conductor of the World at the Llangollen International Music Eisteddfod. As a former member of the Aeolians and a daughter of a musician, I have experienced first hand the positive impact of music on the human experience. I have vivid memories from my time in the Aeolians of people thanking the choir with tears in their eyes for giving them the gift of music. It was not unusual for someone to even pull you aside to say that they were in a hopeless place before they came to one of our concerts and somehow our music encouraged them to fight another day.

A common topic discussed in bioethics is pain – how much pain is too much pain, how we should be managing pain, and how to alleviate pain. Another topic covered is cultural competency. Part of cultural competency is understanding the importance and impact of cultural elements on healing. The nature of bioethics is interdisciplinary, so it would make sense to mesh together cultural practices with pain management and healing. For the African American community, this comes to a head with music.

The African-American experience, music, and health have been intertwined from slavery to modern day. Vocal Music Therapy for Chronic Pain Management in Inner-City African Americans: A Mixed Methods Feasibility Study, explored this relationship. The article starts out by acknowledging the quantitative and qualitative aspects of the relationship African Americans have had with music and tying that to music therapy. The study was designed to evaluate physical functioning, self-efficacy, average pain coping, emotional functioning, perception of change in the patient’s condition, and other benefits. The quantitative results were not the most impactful – there were some improvements for physical pain and coping but they were not considered statistically significant. But the qualitative results were very impressive.

The study found that vocal music therapy actually aided with the subjects generally managing pain, emotional health, and stress. It also encouraged the subjects to incorporate self-care into their routine. The group and community aspects of creating music together also helped the participants feel an enhanced sense of meaning – even with those who had attended traditional group therapy before.  Subject members stated that they reencountered their personal strengths even though they were living in chronic pain. It even helped alleviate depression and reignite a desire to interact with others in some of the participants. This point was critical because of the positive effect of social support on chronic pain management in general.

Part of ethical care is meeting patients where they are. That includes respecting and acknowledging cultural perspectives. Though the impact of music in healing is not unique to African-Americans, the place music has had in the African-American community is very significant. Music was medicine before healthcare even reached these communities. It was the Advil, the local anesthetic, and the morphine. I’ve lived with forms of chronic pain and a large part of learning how to cope with it is facilitating mental fortitude – which was enforced by this study. Music is by no means a substitute for traditional means of pain management, but the dynamic still effective and worth noting. There is a negro spiritual called A Balm in Gilead and I’ve listed the lyrics here:

There is a balm in Gilead
To make the wounded whole
There is a balm in Gilead
To heal the sin-sick soul

Sometimes I feel discouraged
And think my work’s in vain
But then the Holy Spirit
Revives my soul again

Music has been a means of survival for African-Americans since the community’s origins. Gospel, jazz, the blues, and rap have all been used as avenues for expressing painful experiences and to convey a sense of community. So it would only be logical for those same strategies to be incorporated into a more culturally competent and intentional pain management plan. I would love to hear about your experiences with music and health in the comments below Don’t forget to share, like, and sign up for email notifications of new blog posts!

Humming to myself,

The Neighborhood Bioethicist



Balm in Gilead – Contemporary Gospel Version

The Aeolians of Oakwood University – Winning Performance at Llangollen International Music Eisteddfod



Bradt, Joke, Marisol Norris, Minjung Shim, Edward J. Gracely, and Patricia Gerrity. “Vocal Music Therapy for Chronic Pain Management in Inner-City African Americans: A Mixed Methods Feasibility Study.” Journal of Music Therapy 53, no. 2 (January 1, 2016): 178–206. doi:10.1093/jmt/thw004.
Communications, United Methodist. “Part of History, African-American Spirituals Still Heal.” The United Methodist Church. Accessed July 16, 2017.
“Cultural Competence | SAMHSA.” Accessed July 9, 2017.
“EBSCOhost | 110745936 | The Healing Element of the Spirituals.” Accessed July 9, 2017.
Robinson, Tiearea J. “Therapeutic Techniques: The Healing Elements of the Spirituals.” M.A., California State University, Dominguez Hills, 2014.
“THERE IS A BALM IN GILEAD Official Site of Negro Spirituals, Antique Gospel Music.” Accessed July 16, 2017.

Can We Talk: Organ Donation (Social Media Ethics)

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Welcome to our last installment in our organ donation series. If you’ve missed the previous posts, you can find them here (part 1) and here (part 2). This time we will compare and contrast of the pros and cons of using social media to recruit organ donors. According to the digital marketing website, Smart Insights, Facebook has about 1.6 billion users, Instagram has 400 million users, and Twitter has 320 million users as of April 2016. Most of us are apart of this number in one way or another. Pretty much anything can be promoted on these sites and they have become a very useful marketing tool. But should we use social media to encourage people to become organ donors? This issue has become the most ethically prominent with living donations. An article on Slate tells the story of a parent who posted on her Facebook page that she nor her husband were a match for their infant daughter in need of a kidney. In about 24 hours, the family had 100 offers for kidneys. How should we feel about this?


On one hand – social media is a a fabulous tool for efficiently reaching a lot of people. We all know that organs are not only hard to come by, but are hard to match as well. Expanding the pool would help solve that issue. Imagine if even half of the 1.6 billion Facebook users decided to become organ donors. The transplant list would decrease and make room for others who need an organ. The other reason this could be a good thing is that would quickly inform someone’s general public for the need of an organ. Black Lives Matter is an analogous example. Black Lives Matter is an organization that has been at the forefront of the police brutality movement in the United States. Their goal and strategy was to bring to the forefront the effect that police brutality has on black communities. Through the use of social media, Black Lives Matter became a household name and ultimately forced a conversation about the issue. They informed many people about the issue and injustice of police brutality and educated a generation. Using social media to inform the general public of an individual’s need for a transplant could create a wildfire effect and galvanize the every man to get involved in organ donation.


On the other hand, social media could cause other issues. For starters, using social media to promote organ donation in this case could be coercive for the wrong reasons. Social media is a device used for story telling – literally (if you are on Snapchat or Instagram) and figuratively. Some stories are more coercive than others. According to the American Journal of Transplantation, this dynamic is called a “beauty contest” effect. It explains this phenomenon with organ donation websites that post profiles and biographies of future organ recipients to encourage people to donate to them. This dynamic could transfer to social media as well. No one likes seeing babies or children suffer. However, organ donation shouldn’t be based on who has the saddest story. It should be about altruism. Social media definitely has the potential to interfere with that. Another issue is that it can make living organ donation somewhat unequal. Living donation is already dependent on someone’s willingness to give an organ that already belongs to them. Increasing the pool for one individual would make things inherently unfair for those with a more limited pool social resources. In spite of the statistics given above, everyone doesn’t have social media. If one group is receiving an overabundance of limited resources, that means someone else is loosing that opportunity. Social media could tip the scales in a not-so-favorable way.

So what do you guys think – is social media a help or a hindrance? Feel free to comment below and thanks for reading this series on organ donation!


The Neighborhood Bioethicist


Duerr, Benjamin. “Should Patients Be Able to Find Organ Donors on Facebook?” The Atlantic, April 15, 2015.
“How Organ Donation Works, Organ Donation Information |” Html. Accessed June 19, 2017.
“Most Popular Social Networks Global.” Smart Insights. Accessed July 10, 2017.
“Organ Donation.” Encyclopedia Britannica. Accessed June 20, 2017.
“Organ Donation: Don’t Let These Myths Confuse You.” Mayo Clinic. Accessed June 29, 2017.
“Public Solicitation of Anonymous Organ Donors: A Position… : Transplantation.” LWW. Accessed June 30, 2017. doi:10.1097/TP.0000000000001514.
“To Donate Your Kidney, Click Here.” The New Yorker. Accessed June 30, 2017.

Can We Talk: Organ Donation (Rumors and Truth)

I just wanna give a shout out this multimedia experience we have going on today! I mean come on – look at this slideshow.


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I’m done gushing over my handiwork now.

Welcome back to our Can We Talk series on Organ Donation! Last week we did a basic 101 of organ donation – how it works, who it helps, and why it matters (link here). This week, we are going to debunk some rumors about organ donation. Everyone loves a good urban legend. But when it comes to healthcare, we need all of the help and transparency we can get. I love Twitter, so a few weeks ago, I put a poll on my page to see where my twitter community stood on organ donation. As a disclaimer – I do not consider this a true scientific poll. The pool is way too small. But “Black Twitter”* tends to be pretty honest with these types of questions and it’s a convenient way to see how normal people feel about every day issues. The results were more positive than I expected, but there are definitely some rumors worth addressing.

  1. Is a doctor less likely to save me? This is a common assumption. Sure you may have seen this on TV or as a version of a really twisted thought experiment, but that is not how organ donation works. Just like we said in last weeks post, under most circumstances, a doctor won’t know if you are an organ donor until you are declared brain dead. That is when the transplant process starts. There are also very specific circumstances under which death much occur for organ donation to be a option. Emergency responders and hospital staff’s primary concern is saving your life – not procuring an organ. The job of saving your life and organ procurement are actually done by separate teams anyway. So you are safe and sound.
  2. Is my religion okay with it? Most religions are okay with organ donation and consider it a charitable act. Here is an article put together by showing what various religions believe about organ donation ( link here ). Of course, talk to your faith leaders for the final word if you are still concerned.
  3. Can I or my family  have an open casket funeral? You can have an open casket funeral if you are an organ donor. The body is clothed in the casket so scars will not be visible. Skin donations are taken from the donors back. Rods are placed where bone donations were taken. The goal of organ donation isn’t to mutilate the body. It is to give someone else a second chance. That gift is not taken lightly and neither is the donor themselves.
  4. What if they remove my organs before I am dead? Remember from last weeks reading – brain death first, then organ donation. Brain death is essentially when your brain is no longer functioning and is irreparably damaged. Physicians have to confirmed the death before any of the organ donation processes start.
  5. The healthcare system isn’t looking out for me anyway. Why should I donate my organs. I resonate with this and hear this narrative most often among people of color. I can’t blame anyone for that mindset considering the state of healthcare in this country. However, people of color need organ transplants just as much as majority peoples. African-Americans are the largest minority group on the transplant list. In 2014, 20% of all transplant recipients were African Americans. Being an organ donor is not just about the system. It’s about providing resources for your community. To quote “More than half of all people on the transplant waiting list are from a racial or ethnic minority group. That is because some diseases that cause end-stage organ failure are more common in these populations than in the general population. For example, African Americans, Asians, Native Hawaiians and Pacific Islanders, and Hispanics/Latinos are 3 times more likely than Whites to suffer from end-stage renal (kidney) disease, often as the result of high blood pressure.”

So I hope we debunked a couple of myths today! If you have any other questions, be sure to ask in the comments below or though my contact form. See you guys next week for the last installment in our organ donation series!

Next Time,

The Neighborhood Bioethicist

*- “Black Twitter” is a corner of Twitter where issues, dialogue, jokes, and other aspects of the black community are discussed.


Callender, C. O., N. Koizumi, P. V. Miles, and J. K. Melancon. “Organ Donation in the United States: The Tale of the African-American Journey of Moving From the Bottom to the Top.” Transplantation Proceedings 48, no. 7 (September 2016): 2392–95. doi:10.1016/j.transproceed.2016.02.094.
“Death – Mechanisms of Brain-Stem Death.” Encyclopedia Britannica. Accessed June 30, 2017.
“Donation Process | CORE | Center for Organ Recovery & Education.” Accessed June 29, 2017.
“How Organ Donation Works, Organ Donation Information |” Html. Accessed June 19, 2017.
O’mally, Aisha K., and Tracy R. Worrell. “Statistics or Stories, Black or White? Examining Influences of African American Organ Donation.” Howard Journal of Communications 25, no. 1 (January 2014): 98–114. doi:10.1080/10646175.2014.864209.
“Organ Donation.” Encyclopedia Britannica. Accessed June 20, 2017.
“Organ Donation: Don’t Let These Myths Confuse You.” Mayo Clinic. Accessed June 29, 2017.
“ | African Americans and Organ Donation.” Html, July 26, 2011.
Quick, Brian L., Nicole R. LaVoie, Allison M. Scott, Dave Bosch, and Susan E. Morgan. “Perceptions About Organ Donation Among African American, Hispanic, and White High School Students.” Qualitative Health Research 22, no. 7 (July 1, 2012): 921–33. doi:10.1177/1049732312439631.
Robinson, Robinson, and Dana H. Z. Robinson. “Understanding African American’s Religious Beliefs and Organ Donation Intentions.” Journal of Religion and Health 53, no. 6 (201412): 1857–72.
Rubin, Rita. “What ‘Brain-Dead’ Means.” WebMD. Accessed June 29, 2017.
“Why Black People Don’t Want to Donate Their Organs.” Tonic. Accessed June 25, 2017.

Can We Talk: Organ Donation (The Basics)

Hey everyone – We are back with another Can We Talk series! *cues Tevin Campbell*

This time the topic is organ donation. Organ donation can have a bit of a bad wrap – especially among people of color. And that means there is no better timing for some candid conversation about the topic. This will be a three part series. Part one will give an overview of organ donation. Part two will be about common myths surrounding organ donation. Part three will be about the social media ethics and organ donation.

So let’s jump in!

What is organ donation? It’s giving one or more organs to an individual without compensation. You can also donate bodily tissues. Signing up is easy – you can either go to your their neighborhood motor vehicle association but you can also sign up online as well ( link here ). The benefit of signing up online is that you can decide which organs you would like to donate. If you have an organ donation card, that’s not enough documentation to make sure you are in the donor registry and such. You must go through either the MVA/DMV or online registry. If you change your mind about donating, you can remove yourself from the registered donors list at anytime. In most states, you have to be over the age of 18 to sign up for organ donation. Just make sure you let your family know that you are an organ donor, so there are no surprises. Also – organs aren’t matched by race or ethnicity (i.e. black recipients do not just get organs from black donors). Here is a list of organs and tissues that can be donated –

  • Heart
  • Kidneys (2)
  • Lungs (2)
  • Liver
  • Intestines
  • Cornea
  • Skin
  • Heart valves
  • Bone
  • Blood Vessels
  • Connective Tissues
  • Bone Marrow
  • Stem Cells
  • Umbilical Cord Blood
  • Peripheral Blood Stem Cells (PBSC)

There are two types of organ donation – deceased donation and living donation (totally not as scary as it sounds). There are about 125 million people registered up for deceased donation – but only 3 in 1000 can actually become donors upon death. There are only about 6000 living donations per year. SinceI live for a good diagram/chart – here is a plain language step-by-step for each type of donation –

·      You’re admitted to a hospital (severe illness or accident) ·      Evaluated by transplant center to make sure no negative physical or mental effects will come with the donation
·      The medical team does everything they can to save you ·      If everything is okay, the surgery is scheduled and competed
·      If you die and are unresponsive, the medical team runs tests for brain death ·      Your organ is transferred to another individual (Congrats you saved a life!)
·      The Organ Procurement Organization (OPO) and Organ Procurement and Transplantation Network (OPTN) are contacted and organs are artificially maintained until surgical removal
·      If the OPO and OPTN identify you as a donor and identify a match, organ is surgically removed for transplant

You’re welcome.

It’s really important to become an organ donor. There are about 119,000 people on the transplant waiting list list. Over half of the people on the list are minorities. Just over a quarter of minorities are deceased donors. But, statistics are moving in the right direction. In 2010, African-Americans have a higher organ donation per million compared to Whites, Hispanics, and Asians. It is the highest it has been and most of the improvement has been attributed to organ donation educational programs geared towards African-Americans.

We all know that knowledge is power. Knowledge about organ donation is crucial for minorities because we have real reasons for being mistrustful of medicine. But now we have current reasons to move past that mistrust. Anyone can wake up one day and need a transplant – a mother, father, or a sibling. In case you missed it – the transplant waiting list is long. I know I sound like a cheesy motivational speaker, but signing up does make a difference. You can potentially save eight lives by just making the choice to become a donor. Signing up to be an organ donor will give someone a new life, figuratively and literally.

Next week, we will tackle organ donation rumors!

Until next time,

The Neighborhood Bioethicist




Callender, C. O., N. Koizumi, P. V. Miles, and J. K. Melancon. “Organ Donation in the United States: The Tale of the African-American Journey of Moving From the Bottom to the Top.” Transplantation Proceedings 48, no. 7 (September 2016): 2392–95. doi:10.1016/j.transproceed.2016.02.094.
“How Organ Donation Works, Organ Donation Information |” Html. Accessed June 19, 2017.
O’mally, Aisha K., and Tracy R. Worrell. “Statistics or Stories, Black or White? Examining Influences of African American Organ Donation.” Howard Journal of Communications 25, no. 1 (January 2014): 98–114. doi:10.1080/10646175.2014.864209.
“Organ Donation.” Encyclopedia Britannica. Accessed June 20, 2017.
Quick, Brian L., Nicole R. LaVoie, Allison M. Scott, Dave Bosch, and Susan E. Morgan. “Perceptions About Organ Donation Among African American, Hispanic, and White High School Students.” Qualitative Health Research 22, no. 7 (July 1, 2012): 921–33. doi:10.1177/1049732312439631.
Robinson, Robinson, and Dana H. Z. Robinson. “Understanding African American’s Religious Beliefs and Organ Donation Intentions.” Journal of Religion and Health 53, no. 6 (201412): 1857–72.

Designer Babies and Blackness.

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The other week, I was scrolling on Twitter and this video of a black baby gave me so much joy. There was this little dark-skinned, baby girl, just old enough to speak comprehensively, and she was looking in the mirror posing and saying, “I’m GOOOORRRR-geous, I’m GOOORRR-geous.” Duh – anyone’s baby calling themselves gorgeous on camera is adorable and has potential to go viral. But to see a dark-skinned baby, saying with confidence how beautiful she is before she is potty trained warmed my heart.

Colorism is present in many cultures. However, it is especially prevalent in black communities in the United States. Colorism originated in slavery, prospered well through the Civil Rights Era, and has currently planted itself like a weed watered by society’s beauty standards. Individuals were considered more attractive based on how European one’s features were and how fair one’s skin wasa. Preferential treatment and perceived attractiveness based on skin color looms over black children from a very early age.

Traditionally, babies have been conceived with their parent’s gene pool dictating their genetics. But now, an embryo’s genes can be modified before it is even implanted in the womb. The primary purpose of genetically modifying these embryos is to diagnose and remove genetic illness from an embryo. However, it can also predetermine the sex of an embryo and is foreseen to be able to change eye colors, height, and IQ. Naturally, this scientific breakthrough has created a heated ethical debate regarding the use of experimentation on embryos, the general effectiveness of editing genes, and parental power in the making of a baby. This technology can ultimately lead to the creation of designer babies – where parent’s could use genetic modification to enhance “positive qualities” of their children. However, I would like to introduce this thought – will designer babies fan the flames of colorism in the black community? Or more simply put – if you had the option to make your child lighter skinned or darker skinned, would you take it?

Theoretically it could be done. Melanocytes are the skin cells that determine your skin color. Cells carry your DNA. If you can alter or remove DNA from an embryo, you could potentially do the same with skin cells. Truth be told – no would would even have to know. Ethically speaking, this would be problematic. Altering the physical appearance of an infant in general, without their say in the matter, is already a recipe for disaster – especially in the context of skin color. For a black infant, it could send a very negative message to the infant due to the sensitive nature of colorism, beauty, and appearance in black communities. Most importantly, it could aggravate self-hatred in black communities as well. It would directly imply that darker skin and African features are not acceptable and that it is so offensive that a parent is willing to clinically and genetically change it before the child reaches the womb. Culturally speaking, this would be equally as problematic.

Green eyes, looser curls, lighter skin. Before, a person couldn’t choose how you looked. Now, there are options. There is always someone we would be if we had the option. Who would you choose? If you looked deep, would you be cool with who you are? It’s 2017 – we would all say yes in front of the cameras. No one wants to admit that they are not content with themselves – or who their children could be. But designer babies are on the horizon and there is no better time for us to do some self examination. Are we really black and proud – proud enough to let the option just be an option? Or would we make some changes? No need to answer – some things are just meant for you, God, and your therapist.

Thinking out loud,

The Neighborhood Bioethicist

(This post has been updated as of 6/28/2017 to clarify the difference between the current technology used for preimplantation genetic diagnosis and the future implications of said technology.)


“DNA | Facts & Structure.” Encyclopedia Britannica. Accessed June 1, 2017.
Gallagher, James. “‘Designer Babies’ Debate Should Start, Scientists Say.” BBC News, January 19, 2015, sec. Health.
Ghose, Tia, Staff Writer | March 13, and 2014 02:00pm ET. “Children to Order: The Ethics of ‘Designer Babies.’” Live Science. Accessed May 26, 2017.
Knoepfler, Paul. The Ethical Dilemma of Designer Babies. Accessed May 26, 2017.
“Melanocyte | Biology.” Encyclopedia Britannica. Accessed June 1, 2017.
Pang, Ronald T. K., and P. C. Ho. “Designer Babies.” Obstetrics, Gynaecology & Reproductive Medicine 26, no. 2 (February 1, 2016): 59–60. doi:10.1016/j.ogrm.2015.11.011.
PM, Newsweek On 1/11/10 at 6:24. “The Ugly Roots of the Light Skin/Dark Skin Divide.” Newsweek, January 11, 2010.
Rochman, Bonnie. “Customized Babies Are Closer than You Think – The Boston Globe.”, April 2, 2017.
Whetstine, Leslie M. “Ethical Challenges in Assisted Reproduction: The Place of Preimplantation Genetic Diagnosis in a Just Society.” Journal of Child Neurology 30, no. 5 (April 1, 2015): 547–50. doi:10.1177/0883073813511151.

Compassionate Care: The Icing, Swagger, and Finesse.

(A special thank you to Autumn Fiester – the professor who made sure we knew that healing physical ailments is just the first step. Compassion and empathy changes everything.)

Get comfortable cause we are having story time.

I was running to my Uber, trying to avoid an additional charge and my driver leaving me, when I rolled my ankle. But by the time I sat down in the car, the pain had subsided. So what did I do? I went about my day – rock climbing, grocery shopping, and to a networking event. But by the time I got to the networking event, I was in excruciating pain. I embarrassingly (and literally) dragged myself out of the event and asked the security guard where I could easily catch an Uber to go to my neighborhood urgent care. He took one look at my face and suggested that I go to the hospital across the street instead.

So I staggered to security desk in the hospital to ask for directions to the emergency room. What the security guard didn’t know was that I am terrible with directions and got lost within five seconds. Picture this – a random black girl, dragging herself down a hallway, half-fussing with my parents on the phone to tell them I was fine, and half-gasping in pain – clearly not fine, in a hospital in a new city. I looked a hot mess. Definitely not that polished-networking-ready-black-girl magic-powerhouse I was when I walked in (y’all better let me feel myself in peace – I was killin’ it before my injury.)

I finally waived down a hospital employee in a suit to see if I was any closer to the emergency room. He looked at me, apologized for my pain, apologized for the length of the hall, and sent me down said hall in the direction of the ER. I told him thanks and kept staggering. I went a little further and waived down a woman in scrubs to see if I was going in the right direction again. I also mentioned that I was pretty sure that I had sprained my ankle. soon She similarly apologized for my pain, looked at me in pity, and told me to keep walking down the same hallway and that the ER was further down. I thanked her and kept staggering.

Right after that, a younger woman in business attire stopped me and said she overheard me talking to the woman in scrubs. She said there were a set of stairs coming up soon and asked if I needed help. I almost shouted yes because I had no idea how I was going to get down the stairs with the pain. She helped me down the stairs, got me a wheel chair, and wheeled me the rest of the way to the ER – which was much farther away than I thought. She got me inside, made sure I was properly settled into the ER, and waited until the nurse called me in. I asked her name and her position at the hospital – she said she was an administrative assistant. Not a doctor or a nurse, but an administrative assistant. To be truthful, I had too much pride to ask for a wheelchair myself even though I needed one. But this woman looked beyond my exterior willingness to struggle and identified my need immediately. And she literally didn’t have to – it was not in her job description to help me. But her choice to show me compassion was the difference between a very miserable and lonely evening and one where I left the ER with a smile.

I have worked and studied at community hospitals and academic teaching hospitals – with my fourth location coming up this summer. My bioethics’ professors always pushed the importance of advocating for compassionate care in medicine. But for the first time in my life, I experienced why compassionate care matters. Here’s the truth – everyone who I spoke to at the hospital had the same agenda of making sure I received the care I needed. When I left the hospital, I got the ankle brace, the crutches, and the painkillers. So the job got done. But I was impacted the most through the compassionate care I was given. It’s the difference between a suit off the rack and a custom made suit. Intentional compassionate care is the icing, the swagger, and the finesse. It takes healthcare from ordinary to extraordinary. You could always get away with providing ordinary care. After all – the goal is to get patients’ healed efficiently and effectively. But I would dare say that side-stepping compassionate care is just mediocrity with a nicer name. Why not take it to the next level?

Cake with icing tastes better. Presence with swagger looks better. A touch with finesse feels better. Healthcare with compassion – well just is better.

Recovering from a Sprain,

The Neighborhood Bioethicist