(Golden) Global Change and LGBT Rights

by Sean Philpott-Jones, Director of the Center for Bioethics and Clinical Leadership

I make it a tradition to watch televised awards shows like the Oscars, Emmys, and Grammys. This is not because I particularly care about the entertainment industry, but primarily because I enjoy providing a running commentary of snarky comments about the various nominee’s clothes, styling and speeches on Facebook and other social media outlets.

Obviously, then, I watched the Golden Globe awards ceremony this past Sunday. Awarded annually by the Hollywood Foreign Press Association, the Golden Globes honor excellence in both television and film, and are often seen as a precursor to (and predictor of) the Emmys and the Oscars.

I usually don’t pay much attention to the actual awards themselves, but I was pleasantly surprised when this year’s ceremony became (in part) a celebration of the lesbian, gay, bisexual and transgender (LGBT) community. For example, the television drama The Normal Heart, adapted from the Larry Kramer play of the same name, received three nominations, including a nod for Best Miniseries or Television Film. Openly gay actor Matt Bomer won for his supporting role in that film, which depicts the early days of the HIV/AIDS epidemic in New York City.

More importantly, the television series TransParent, which follows the lives of a Los Angeles family after the patriarch comes out a transgendered, won Best TV Comedy. Jeffrey Tambor also won Best Actor for his role as Maura Pfefferman, a retired professor of political science who begins to transition from male to female.

In his acceptance speech, Mr. Tambor dedicated his remarks to the transgender community, saying: “Thank you for your courage, thank you for your inspiration, thank you for your patience and thank you for letting us be a part of the change.” This was quite an improvement from last year’s ceremony, when both Michael Douglas and Jared Leto managed to offend the entire LGBT community with speeches that mocked the very characters they were honored for playing: a gay man and a transgender woman, respectively.

Given this, I can’t really blame the Hollywood press for crowing that this year’s Golden Globes were “a watershed moment” for LGBT rights. In fact, it has been a watershed year for the LGBT community.

With the recent federal court rulings in Florida and South Dakota, for example, the number of states in which same-sex couples are able to marry has more than doubled. Over 70% of Americans now live in a marriage equality state. New state laws and local ordinances have also been passed that recognize the rights and dignity of LGBT people, including legislation that makes it easier for transgender people born in New York City to correct their birth certificates.

But it far too early, as many in the press have done, to suggest that the fight for LGBT equality is complete. Golden Globe co-host Tina Fey joked that the movie Selma, nominated for Best Motion Picture, is “about the civil rights movement, which totally worked and now everything’s fine.” She could have made the same joke about TransParent, The Normal Heart, and LGBT rights.

Anti-LGBT organizations like the Family Research Council, Focus on the Family, and the National Organization for Marriage are continuing their efforts to prevent or repeal legislation that protect all people regardless of sex, race, ethnicity, sexual orientation, or gender identity. They are often successful in their efforts, as seen by the recent vote by the residents of Fayetteville, Arkansas, to repeal an anti-discrimination ordinance.

Various state representatives and federal legislators are also supporting so-called ‘religious liberty’ bills, which would allow public businesses to refuse goods and services to LGBT individuals. Republicans in the US House of Representatives continue to block a vote on the Employment Non-Discrimination Act, which would prohibit employers from discriminating against workers on the basis of sexual orientation or gender identity.

Pervasive stigmatization and marginalization of the LGBT community continues, even in Hollywood. The cable network TLC, once known as The Learning Channel but now home to highbrow shows like Here Comes Honey Boo Boo, recently debuted a series called My Husband’s Not Gay. This reality series follows the lives of several men who admit they are sexually attracted to other men but who refuse to identify as gay or bisexual. Most of these men are married to women, despite their sexual orientation, presenting the idea that suppressing same-sex attraction is somehow healthy or achievable. Such shows do little but support outdated stereotypes that sexual orientation or gender identity is a choice, and that LGBT individuals can be “cured” through reparative therapy.

Small wonder then that hate crimes and violence against LGBT individuals is still common. In fact, it is on the rise. It should also come as no surprise that a significant percentage of LGBT individuals attempt to take their own lives. Many are successful in this attempt, including Leelah Alcorn, a transgendered Ohio teenager who threw herself in front of a tractor-trailer last week. In her suicide note she wrote, “Please don’t be sad, it’s for the better. The life I would’ve lived isn’t worth living in … because I’m transgender.” But Leelah was wrong. Her life was worth living in.

Despite increasing visibility and recent accolades, there is still a long way to go before the LGBT community achieves equality, regardless of what recent headlines in the Hollywood press might lead you to believe. We owe it to Leelah and others like her.

[This blog entry was originally presented as an oral commentary on Northeast Public Radio on January 15, 2015, and is available on the WAMC website. The contents of this post are solely the responsibility of the author alone and do not represent the views of the Bioethics Program or Union Graduate College.]

Striking the Balance Between Population Guidelines and Patient Primacy

by Susan Mathews, Bioethics Program Alumna (2014)

Breast cancer is the second leading cause of cancer death among North American women. Although routine mammography decreases the risk of death by about 15 percent, research on the effectiveness of wide-scale screening programs shows that 2,500 people would need to be screened to prevent one cancer death among women ages 40-49. Given this, the US Preventive Services Task Force (USPSTF) updated its population guidelines in 2009 to advise against routine screening mammography for women under 50.

These new recommendations were met with controversy and confusion, with many questioned the ability of “experts” to weigh potential benefits and harms of screening for individuals.

But how should population data like this, along with other epidemiologic, social, psychological and economic factors, be considered in medical decision-making?

To read more, click here.

[This post is a summary of an article published on Life Matters Media on November 25, 2014. The contents of this blog are solely the responsibility of the author and do not represent the views of the Bioethics Program or Union Graduate College.]

Fear and Loathing in Liberia

by Sean Philpott-Jones, Director of the Center for Bioethics and Clinical Leadership

Two weeks ago, I wrote a commentary decrying the current hysteria in the US over Ebola. It was ironic, I argued, that so many people were demanding the federal government take immediate steps to address the perceived threat of Ebola while simultaneously ignoring the real public health threats that we face.

A seasonal disease like influenza, for example, takes the lives of tens of thousands of Americans every winter. Still, far too many people refuse to get an annual flu shot. Similarly, outbreaks of preventable (and potentially deadly) diseases like measles, mumps and whooping cough are becoming more and more common as childhood vaccination rates plummet.

Moreover, the politicians and pundits calling on the Obama administration to take radical steps to combat Ebola are the same individuals who have repeatedly criticized efforts to combat the main causes of mortality in the US. Plans to tax junk food or limit the size of sugary sodas are seen as unwelcome government intrusions into the private lives of Americans, despite the fact that over 300,000 Americans die of obesity-related illness every year.

This isn’t to say that Ebola shouldn’t be a concern for public health officials in the US. I previously criticized both the US Centers for Disease Control and Prevention (CDC) and US Customs and Border Protection for their initially tepid response to the crisis.

CDC officials, for instance, were slow to update guidelines for treating patients with Ebola, initially recommending a level of training and use of protective gear that was woefully inadequate. As a result, two nurses who cared for an Ebola patient in Dallas are now infected with the virus. Thankfully, these women are likely to recover.

The CDC has now released new guidelines for clinicians that are similar to those used by Doctors Without Borders, the charitable organization at the forefront of combatting the Ebola epidemic in West Africa. These guidelines, along with new screening procedures for travelers arriving from countries affected by the Ebola epidemic, make it even more unlikely that we will have a serious outbreak here in the US.

Unfortunately, our public response to Ebola is marked by ignorance, fear and panic. Parents of students at Howard Yocum Elementary School, located in a bucolic suburb of Philadelphia, recently protested the fact that two students from Rwanda were enrolled. Rwanda is a small East African country that is 3,000 miles away from the epicenter of the Ebola crisis, and has no reported cases of the disease. Nevertheless, frightened parents threatened to boycott classes. In response, school officials asked the parents of these two young children to “voluntarily” quarantine their kids.

What happened at Howard Yocum Elementary School is not an isolated case. A teacher in Maine was put on mandatory leave simply for attending a conference in Dallas, where the first US cases of Ebola were reported. A middle-school principal in Mississippi was suspended after returning from a family funeral in Zambia, another East African country located many thousands of miles from the heart of the Ebola outbreak.

Cruise ships have been put on lock down, subway stations closed, family vacations cancelled, and buses and planes decommissioned because of public fear about Ebola and the risks it poses.

The sad thing is this much of irrational fear is driven by xenophobia and racism. Since the Ebola outbreak began, over 4,500 people have died in West Africa. However, the mainstream Western media only began to report on the epidemic once an American doctor became infected. The level of care and treatment offered to infected patients from the US and Spain – including access to experimental drugs and vaccines – is also far greater what is provided to patients in affected countries.

Finally, African immigrants to the US are being increasingly ostracized and stigmatized, even if they come from countries unaffected by Ebola. Their kids are being denied admission to school, their parents denied service at restaurants, and their friends potentially denied entry to this country.

Many US politicians, mostly conservative lawmakers but also some progressive policymakers facing tough reelection campaigns, have called for a travel ban to affected countries in West Africa. This is despite statements from the World Health Organization, Red Cross and CDC that such a travel ban will be ineffective. This is also rather disproportionate compared with lawmakers’ reactions to past outbreaks of mad cow disease in England, SARS in Canada and bird flu in China. No travel bans were proposed in those situations.

Rather than fear West Africans, now is the time to embrace them. We could learn a lot from them. Consider the recent piece by Helene Cooper, a New York Times correspondent and native of Liberia. In that country, where over 2,000 people have died, few families have been left untouched by Ebola. At great personal risk, Liberians have banded together to fight the disease rather than isolating and ostracizing those who are sick. Unlike the average American, they are responding not with fear and loathing but with compassion and love. It’s time for us to do the same.

[This blog entry was originally presented as an oral commentary on Northeast Public Radio on October 22, 2014, and is available on the WAMC website. The contents of this post are solely the responsibility of the author alone and do not represent the views of the Bioethics Program or Union Graduate College.]

Fever Pitch

by Sean Philpott-Jones, Director of the Center for Bioethics and Clinical Leadership

Public concern about Ebola reached a fever pitch this past week, no pun intended, following the revelation that a patient in Dallas was infected with this deadly virus.

Returning from a recent trip to Liberia, where thousands of people have died from Ebola since the epidemic began last December, Thomas Eric Duncan (who died shortly after this commentary was recorded for NPR) developed symptoms shortly after arriving in the United States. Public health officials in Texas are now tracking and quarantining the 38 people who had contact with Mr. Duncan after he became ill.

US health professionals and immigration officers have admittedly been slow to react to the Ebola crisis. When Mr. Duncan first started feeling sick, for example, doctors at the Texas hospital where he was first seen failed to recognize the disease. They instead sent him home with antibiotics for what they believed was a common respiratory infection, unwittingly exposing more people to the deadly virus. This so concerned officials with the New York City Department of Health and Mental Hygiene that they are now sending actors faking symptoms of Ebola into emergency rooms in order to test local preparedness.

More worrisome is the fact that US Customs and Border Protection agents seem uninformed about the risks and warning signs of Ebola infection. Several journalists covering the Ebola outbreak in West Africa have reported that immigration officials have failed to screen air passengers arriving from afflicted areas for the disease, even when prompted with that knowledge.

All those concerns and considerations aside, the truth of the matter is that we are unlikely to experience a full-blown outbreak of Ebola here in the United States, regardless of what the current media frenzy around Mr. Duncan and other cases suggests.

The main reason is this: Ebola, although deadly, is not particularly infectious. Transmission occurs when people are exposed to the bodily fluids (blood, feces or saliva) of an infected and symptomatic patient. This is why health care workers and others caring for afflicted patients are most at risk, and why the rest of us are relatively safe.

This also explains why the epidemic has taken hold in West Africa, a region of the world where the existing public health infrastructure is weak, sanitation systems are crumbling, and cultural traditions around dying require family members to express love for the deceased by touching or hugging the dead body. That is very different from the situation in the US.

The Ebola epidemic raises a lot of interesting policy issues and ethical challenges: if and when to quarantine travelers coming from afflicted areas, how to respond to possible cases of infection in the clinic and in the community, what are the obligations of doctors and nurses to care for those who with Ebola, and when to provide experimental and untested treatments to those who are sick. Except for those with relatives in West Africa, however, most of us who live in the United States shouldn’t be overly concerned about this disease.

Despite this, millions of Americans are taking to social media sites like Facebook and Twitter to express concern (and even outrage) over how local, state and federal agencies have dealt with the Ebola crisis. Many of these individuals are the same ones who fail to vaccinate their kids against measles, whooping cough or the mumps. Others fail to get a yearly flu shot. But these are the diseases that should terrify us.

Take influenza, for example. It is far more contagious than Ebola, being spread through respiratory droplets or contaminated objects like door handles and telephone receivers. People infected with the flu can also spread it to others even if they do not show signs of illness. This disease will kill nearly 50,000 people in the United States this winter, compared with 3,000 people who have died in the current Ebola outbreak. Despite this, less than half of all Americans will be vaccinated against influenza in the coming year.

Rates of childhood immunization have also declined markedly as parents (particularly more progressive and affluent parents) have become increasingly skeptical of the safety and value of vaccines against polio, measles and whooping cough. As a result, we are seeing a resurgence of these otherwise preventable (and potentially deadly) infectious diseases.

This is the great irony of the situation. Americans are up in arms about the unlikely possibility that there will be a mass outbreak of Ebola on US soil, but are apathetic about the real public health threats that they face.

[This blog entry was originally presented as an oral commentary on Northeast Public Radio on October 9, 2014, and is available on the WAMC website. The contents of this post are solely the responsibility of the author alone and do not represent the views of the Bioethics Program or Union Graduate College.]

Can Social Media Save Us from the “Spiral of Silence?”

by Karen Solomon, Bioethics Program Student

Studies suggest that, before the advent of the Internet, we are unlikely to share minority or unpopular viewpoints with our co-workers, friends and relatives. This inclination creates, in essence, a “Spiral of Silence.”

But does the Internet provide a remedy to the “Spiral of Silence,” by encouraging online discussion of viewpoints that may be unpopular? Contrary to the hopes of social media advocates, new research finds that social media may not provide a voice to those who feel uncomfortable expressing minority viewpoints in face-to-face relationships.

Scientists at the Pew Research Center surveyed 1801 adults regarding a political issue over which public opinion was divided: Edward Snowden’s leak of the US government’s extensive surveillance program. The survey examined three areas: subjects’ opinions about the leaks, subjects’ willingness to express their opinions about the leaks in both online and face-to-face contexts, and subjects’ perceptions of others’ opinions in online and face-to-face settings.

They found that those who were not comfortable discussing their opinion about the Snowden leaks in face-to-face discussions were also unwilling to use social media as an outlet to post their viewpoints. Among the 14% who would not discuss the leaks in face-to-face discussions, only 0.3% of these were willing to post their opinions on social media.

In fact, researchers found that the “Spiral of Silence” also applied to social media. Those on Facebook were twice as willing to share their views with their Facebook network when they believed their network was in agreement.

Several factors may explain our continued unwillingness to share controversial opinions, including concerns that online posts may be viewed by future employers or by those in authority. It could also be that social media users, exposed to a wide range of opinions via their social networks, are less willing to speak up because they are “especially tuned into” others’ opinions.

But what would it mean if use of social media does not provide a voice for discussing viewpoints we believe are unpopular? What if social media does not encourage more diverse outlooks on topics we care about? What if instead of encouraging discussions, it turns out that use of social media does the opposite and actually stifles expressing opinions our face-to-face interactions, even when we feel others would agree?

Social media is still relatively new, despite its far-reaching impact on how many of us communicate. If we accept that our willingness to share opinions and reactions to events and information is important to how we learn, understand, and think about what is important for us in managing work, school, and our relationships, then this study provides plenty of food for thought. Online learning is ever more important for higher education, which is increasingly provided online and integral to the training and education of professionals, including tomorrow’s bioethicists.

Discussions that nurture diversity of opinion foster sound ethical decision-making. Research into group decision-making cites diversity of opinion as an essential quality of “wise groups.” Diversity of opinion allows for the consideration of all relevant information, surmounting the “herd mentality” that can rob groups of their independence when tackling ethical dilemmas. Recognizing and addressing obstacles to deliberative decision-making is integral to the consistent application of ethical principles across domains, including social media and ethics blogs, discussion boards in online bioethics courses, and hospital ethics committee meetings.

[The contents of this blog are solely the responsibility of the author and do not represent the views of the Bioethics Program or Union Graduate College.]

Taking the Icy Plunge (Or Not)

by Sean Philpott-Jones, Director of the Center for Bioethics and Clinical Leadership

There’s an epidemic that is sweeping this country. It’s not Ebola, despite all of the hype and misinformation about that disease that has dominated the news in the past two weeks. Rather, I’m talking about the ice bucket challenge.

Anyone who has watched television in the last couple of weeks has seen this: newscasters, celebrities and athletes like Matt Lauer, Martha Stewart and Nick Swisher being doused with a bucket of ice water in the name of charity. The goal of the ice bucket challenge is to raise money and awareness about amyotrophic lateral sclerosis (ALS, also known as Lou Gehrig’s disease).

ALS is a neurodegenerative disease that affects nearly 30,000 Americans. It primarily affects people in their mid-40s to mid-60s, and is characterized by an increasing loss of motor function. Initial symptoms include muscle weakness or slurred speech. As the disease progresses these symptoms become increasingly pronounced. Patients with ALS gradually lose the ability to walk, speak, eat and (eventually) breathe. They slowly become prisoners in their own bodies, fully aware but trapped in an increasingly uncooperative shell.

The root cause of the disease is still unknown, and there is no known cure. Treatments can slow the onset of symptoms, but most patients succumb to the disease rather quickly. The majority of people living with ALS die within 3-5 years of their initial diagnosis, although there are notable exceptions like famed physicist Stephen Hawking, who has lived with the disease for over 50 years

The federal government spends about $60 million on ALS research. Private organizations like the ALS Association also spend money, both to develop new treatments and to provide care for those affected by the disease. As a non-profit organization, however, the ALS Association depends on contributions from people like you and me, and that’s where the ice bucket challenge comes in.

The challenge is simple. A person either donates $100 to the ALS Association or agrees to post a video of them getting doused with ice water on a social media site like Facebook (usually with a hash tag like #IceBucketChallenge or #StrikeOutALS). That person then challenges three of their friends to do the same: donate or get doused.

The campaign has been remarkably successful. In the past month, the ALS Association has raised over $1.5 million. Donations are up nearly a hundredfold since the campaign began. That’s a good thing, so what I’m about to say is likely to be surprising and even a little upsetting to some.

I think the ice bucket challenge is a crock, and I want no part of it. To all my friends who have called me out on Facebook to participate, my answer is ‘no’.

This isn’t to say that I don’t believe that ALS is a terrible disease. It is. I have seen the effects first hand, when the brother of a close friend contracted the disease. I have also donated to the ALS Association in memory of a former student’s father, who died from complications related to ALS last year

I am opposed to the ice bucket challenge for a number of reasons. First, I don’t believe that it does anything to raise awareness of ALS in the long term. Most of the videos that I have seen posted on Facebook, Vine and other social media sites say little to nothing about the disease and its impact on the families affected by ALS. They also don’t discuss why monetary donations are desperately needed, where to donate to, or how the money will be used.

Second, I have a real problem with a fundraising campaign in which public humiliation or exhibitionism seems to be the primary goal, with donations to a charitable cause an afterthought. Consider the rules of the ice bucket challenge: you either film yourself getting doused with ice water or you donate $100 to a charity. Charitable donations are the consolation prize in this extortive game.

In fact, what most people don’t realize is that the ice bucket challenge predates the ALS Association campaign. It was actually started as a game among pro athletes like golfer Greg Norman, with those who refused asked to donate to a charity of the challenger’s choice. The original challenge was never about raising money or awareness of a charitable cause, and now we have thousands or millions of Americans who feel like they’ve contributed to ALS research without actually doing anything.

If you want to help those living with ALS, dunking a bucket of cold water over your head is not the way to do it. Rather, you should visit the websites of organizations like the ALS Association and learn more about the disease. You should donate money to the cause and encourage your friends and family to do the same (without subjecting them to hypothermia). You should write your Congressional representatives and encourage them to increase funding for ALS research. Finally, you should consider donating your time to help those with the disease and their families.

Save the ice for your drinks.

[This blog entry was originally presented as an oral commentary on Northeast Public Radio on August 14, 2014, and is available on the WAMC website. The contents of this post are solely the responsibility of the author alone and do not represent the views of the Bioethics Program or Union Graduate College.]

Big Bad Ebola

by Theresa Spranger, Bioethics Program Alumna (MSBioethics 2012)

Last week Ebola came to the United States, it came on a specialized plane in the form of two medical missionaries. The conversation since has revolved around whether or not bringing them home for treatment was wise and/or just.

First, let’s talk about the risk of Ebola transmission, this seems to be the main concern for those who object to the patients being transferred to the U.S. As a nation we are at far greater risk from travelers not yet showing signs of the disease. The two missionaries are being well isolated and every precaution has been taken to ensure the virus does not escape the containment unit. The risk of contamination, transmission, etc. is very low from these patients. It is certainly not zero, a lie I have heard too many times from the media, but it is extremely low.

An argument I simply can’t stomach is: If the missionaries caught Ebola while using the appropriate personal protection equipment (PPE) isn’t the American medical staff at the same risk? Absolutely not. In Africa Ebola is rampant, patients are kept in large wards, the disease is in the communities, and there is no possible way the healthcare providers could have kept their guard up at all times. The risk of contracting the disease while in Africa is high, no matter the protection they used.

Argument 2: They knew the risks and went over anyway, just leave them in Africa to suffer the consequences of their decision. True, they knew the risks and this a viable, though not-so-compassionate response to the problem. Honestly, I think either decision could have been rationalized though I am sure the families of the missionaries appreciate the choice we made to bring their loved ones home and if it had been your family member you would have wanted them home too.

Now that we have unpacked the risk of Ebola spreading in the U.S. I want to talk about the experimental Ebola antiserum. It is reported in the media that the two American missionaries have received this experimental antiserum and I have heard calls to release the drug to all those suffering in Africa. Advocates for release of the drug are particularly intent that it be given to the medical staff who has become infected while treating Ebola patients, since they were infected in the same way as the Americans. I understand the desire and it “feels” compassionate to fight to send this antiserum to Africa. However, there are some very important reasons why this should not happen:

First of all, we don’t know that this drug even works, it’s experimentation in humans is extremely limited, and for all we know it could cause more harm than good. It may seem like the simple solution in an emergency to toss protocol out the window. However, for the safety of the trial participants studies need to be limited in scope and as controlled as possible. If released to the general public or even the medical staff of Africa there would be no way to appropriately monitor for side effects and safety issues. Furthermore, to get the drug to the population as quickly as “demanded” would necessarily violate all study regulations and proper procedure in Africa. This is a huge risk, and if anything were to go wrong with the drug or study who would be blamed? Certainly America and the scientists. It simply isn’t a wise move.

Secondly, the supply of antiserum is extremely limited, there would be no way to make an acceptable amount of antiserum to treat those infected, presuming of course that the drug does what it is intended to do without major side effects.

The scientists have been painted as the bad guys by many of those pushing for the drug’s release and this is simply not true. Those scientists have committed their lives to finding a cure for Ebola and just because they are bound to a process you don’t like right now doesn’t mean that they are evil. If the process is followed and the trial successful perhaps we can have a long term cure for Ebola. Pushing to exempt this project from the scientific process will not help long term progress and could result in short term disaster.

It is easy and feels right to act on emotion, but it is rarely the wise choice.

[The contents of this blog are solely the responsibility of the author and do not represent the views of the Bioethics Program or Union Graduate College.]