Let Harrison Bergeron Dance

by Patricia Mayer, MD, Bioethics Program Alumna (2009)

All I can think of when reading the case of Indian sprinter Dutee Chand is Harrison Bergeron, protagonist of a 1961 short story by author Kurt Vonnegut.

For those of you who don’t know who Dutee Chand is, she is a Indian sprinter who was banned from the 2014 Commonwealth Games because her testosterone level was “too high”. Unlike other athletes who use banned substances to achieve this, Ms. Chand’s testosterone levels were not artificially elevated. She was not “doping” by taking testosterone supplements, and there are no accusations of her “not being a woman”. She simply produces high levels of testosterone naturally.

Although testosterone is known as the male sex hormone. It plays a key role in male reproductive development, as well as such secondary sexual characteristics such as increased muscle and bone mass. But testosterone is present in all persons, both men and women. Men generally have higher levels than women, but levels can vary between individuals of both sexes. Some men have low levels and some women have high levels, and vice versa. In some cases in which men and women also have “abnormal” levels, it can be the result of genetic factors or other medical conditions. In Dutee’s case, she is reported to have hyperandrogenism.

The International Association of Athletics Federations (IAAF) prevented Ms. Chand from competing in the 2014 Commonwealth Games because it felt that her naturally elevated levels of testosterone gave her an unfair advantage over the other female athletes. But the link between testosterone level and athletic prowess is tenuous at best. There is no evidence that women with high testosterone are better athletes than women with lower levels. Many factors go into athletic success including training, drive, and determination, to name but a few. Still, the IAAF has set a testosterone level of 10 nmol/liter as the upper level at which they will allow women to compete in professional competitions.

So what if a woman like Dutee’s testosterone level are naturally higher? Should they be required to do something to lower it below 10 nmol/liter in order to compete? Will otherwise health women be forced to undergo surgery, use drugs or take hormonal suppressants in order to “level the playing field”?

The fact of the matter is that athletic playing field has never been level. It can’t be. There are, for example, genetic differences that make some people outstanding in one sport or another. Michael Phelps is said to have a “body made for swimming glory”. Usain Bolts’ height and high percentage of fast twitch fibres drive his speed in the track. Gabby Douglas’s diminutive stature contribute to her prowess in gymnastics. Shall we alter Phelps physique? Remove some of Bolt’s fast twitch muscles? Administer growth hormone to make Gabby taller? All these interventions would potentially “level the playing field,” but all are crazy.

Which brings me back to Harrison Bergeron. Kurt Vonnegut’s famous short story begins:

THE YEAR WAS 2081, and everybody was finally equal. They weren’t only equal before God and the law. They were equal every which way. Nobody was smarter than anybody else. Nobody was better looking than anybody else. Nobody was stronger or quicker than anybody else. All this equality was due to the 211th, 212th, and 213th Amendments to the Constitution, and to the unceasing vigilance of agents of the United States Handicapper General.

Each person in that society was required to wear handicapping contraptions to offset natural traits that might make him, in some way, “better than” somebody else.

Harrison Bergeron…is a genius and an athlete, is under-handicapped… scrap metal was hung all over him… Harrison looked like a walking junkyard. In the race of life, Harrison carried three hundred pounds.

And in case you’ve not read the story or have forgotten the ending, let me recap: Harrison throws off his handicaps and dances … until he is shot dead by the Handicapper General.

Let Harrison dance. And let Dutee run.

[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.]

 

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The FDA Flexes Its Muscles on Testosterone

by Karen Solomon, Bioethics Program Student

In 2002, Solvay Pharmaceuticals developed a new marketing strategy that characterized the natural decline in testosterone production associated with normal male aging as a medical problem, termed low-T. The ultimate objective was to encourage physicians to prescribe testosterone to otherwise healthy patients to combat the effects of normal male aging, such as low energy and libido.

This marketing strategy worked. In the last decade, testosterone use in men has increased by over 300%. Over 2 million men are now being treated with testosterone in the US, earning pharmaceutical companies a great deal of money. In 2012, US testosterone sales hit $2 billion, up from a “mere $324 million” in 2002. Although the US leads the world with testosterone prescribing, a significant and steady increase in testosterone use has been seen across the globe.

However, safety concerns over testosterone use by otherwise healthy men are mounting. One observational study revealed that within three months of starting testosterone, heart attacks doubled in men over 65, and in younger men with heart disease. Another study found that among older men with low testosterone undergoing coronary angiography, many with heart disease, there was a 30% increase of “stroke, heart attack, and death” among those being treated with testosterone.

Earlier this year the FDA took notice, asking an Advisory Committee to provide recommendations on licensing and use of testosterone as an anti-aging panacea. That committee has since recommended that the Agency place additional restrictions on the ability of pharmaceutical companies to promote testosterone for low-T. The panel also recommended that researchers conduct additional clinical trials designed to better understand the frequency and severity of side effects associated with testosterone use.

It is encouraging to see an FDA Advisory Panel argue for greater caution with the use of prescription drugs in otherwise healthy individuals. As demonstrated with testosterone, FDA drug approval does not mean that all potential safety issues had been vetted. When drugs are prescribed with larger and more diverse populations than those studied in clinical trials, new safety concerns can arise. Once physician prescribing habits become established for off-label uses, drug manufacturers may not have an incentive to pursue additional studies to demonstrate whether such use is effective or safe.

Hopefully this will change. Until recently, manufacturers profited from increased sales while questions about whether off-label use was safe or effective were left unanswered.

In 2007, however, the FDA was given new authority under the Food and Drug Administration Amendments Acts (FDAAA), to require manufacturers to conduct post-marketing studies, as new safety information becomes available. The FDA now has the option to flex new regulatory muscles, as they have done with testosterone manufacturers, instead of negotiating for voluntary action with little promise of an end game. This can only be a win for patients.

[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.]

What Price Immortality? Privately Funded Projects and the Prolongation of Life

By Richard Koo, Bioethics Program Alum (MS Bioethics 2011) and Adjunct Faculty

Seemingly ripped from the covers of comic books, no less than three privately funded projects seeking the prolongation of human life have been publicized in the past year.

The 2045 Initiative, dubbed “the Avatar Project”, is arguably the most futuristic and non-traditional of the three projects.  Founded by Russian media entrepreneur, Dmitry Itskov, and featured at a conference in New York last summer, the Avatar Project seeks to create technologies that enable the transfer of human “personalities” to a non-biological avatar, thereby extending life to the point of immortality.

Plans are for the project to be divided into four stages with corresponding developmental time-frames.  Stage 1 (2015-2025) contemplates the improvement of technologies that will allow for the control of prosthetics and robotic components through a brain-computer interface.  Stage 2 (2025-2035) calls for the creation of a full-functioning robot, an avatar, with which the human brain can be linked.  Stage 3 (2030-2035) envisions the achievement of technological capabilities that allow for the transfer or uploading of human consciousness into the avatar.  Stage 4 (2045 and beyond) involves endowing the “humanized avatars” with capabilities that exceed what humans are now capable of doing.

This sounds like the stuff of science fiction, movies (think, “Avatar”, “Surrogates”, “Transcendence”) and wishful thinking. But Itskov’s commitment to financially support  the underlying research is very real (he has net worth of over a billion dollars). He also has the public support of the Russian government as well as several notable visionaries, including roboticist Hiroshi Ishiguro, futurists Raymond Kurzweil and Peter Diamandis, founders of Singularity University (an unaccredited educational institution whose stated purpose is to “utilize accelerating technologies to address humanity’s hardest problems”), and the Dalai Lama (whose support for this project begs to be the subject of another blog!).

Last month, J. Craig Venter announced the formation of a new company, Human Longevity, Inc. (HLI), whose purpose is to develop technologies to allow people to live longer and healthier lives.  Venter is perhaps best known as the head of the private industry effort to be the first to sequence the human genome.  Scientists have speculated that the longevity of centenarians is driven in large part by their having genetic variations that protect them from the effects of aging. Venter plans to have HLI acquire the capability of processing 40,000 human genomes or more a year in a quest to identify the human genetic variations that promote longevity.  Along the way, HLI will collect genetic data on the human microbiome (microbes that inhabit the human body) to develop advanced probiotics, and on the human metabolome (various metabolites, biochemical and fats), with a view to improving human health.  In that connection, HLI will initially target treatment of age-related diseases such as cancer, diabetes, heart and liver diseases and dementia.  HLI’s business plan sounds awfully ambitious, but then again Venter has an established track record in the field of genomics of making things happen, as well as $70 million of privately funded capital for HLI starting out of the gate.  There is apparently more than one billionaire (apart from Itskov) who is interested in living a longer life.  HLI’s co-founders include Robert Hariri, a stem cell pioneer affiliated with Celgene, and Peter Diamandis, who also supports the Avatar Project.

Last fall, Google, Inc., which needs no introduction, announced that it had made a major investment in California Life Co. (or Calico for short), a biotech start-up whose focus will be on combating aging and age-related diseases.  Thus far, Google has declined to provide details on how Calico would operate or what it would do, but it did publicize the recruitment of several biomed rockstars on Calico’s team in addition to Ray Kurzweil, who also supports the Avatar Project.  It’s worth noting that Google’s two founders, Larry Page and Sergey Brin, both attended Singularity University.

Here’s what comes to my mind:

  • Should we humans being going down this road at all to seek immortality or longer life?

Some folks would even argue that it’s just plain wrong to play God or to mess with what it means to be human.  Philosophy and religion aside, on the one hand, it’s hard to argue that finding a cure to disease and suffering and helping people overcome disabilities (e.g., with the use of prosthetics) are not worthwhile goals.  On the other hand, the potential for abuse and unexpected developments along the way are frightening.

  • Do these three projects, announced within the span of a year, portend the privatization of the quest for immortality or longer life?

It sure seems like it.  Governments don’t have the motivation to make a long-term investment in prolongevity R&D and wait for the return on investment to the extent that wealthy individuals do.  We can expect announcements of new private prolongevity projects or the additional funding of the ones presently off the ground in the near future.

  • Can privatizing the quest for immortality and long life become problematic?

When we speak of private parties cutting the keys to open the door to changing the course of human evolution, I think the answer is yes.  For one thing, private parties do not have to act for the greater good, each project presumably having to be held accountable to obtain a return on investment for the investors first.  Furthermore, depending on the structure of the organization and how it is capitalized, a project does not even have to share any details of what it is doing (see Calico).  There also exists the concern that in the hands of private parties, benefits to be gained from the technological advances from the project will be reserved for the wealthy few.  Finally but not exhaustively, undertaking to address the socio-economic fall-out that comes with longer human life on average…e.g., how to provide for the social security, feeding, housing, health care and employment in societies where people live significantly longer on average…is undoubtedly not within the scope of any such project.

  • How about regulating it?

Right now, the path between getting these prolongevity projects off the ground and the realization of their goals seems far too remote for there to be any political will to try to regulate their activity.  In fact, governments are probably glad to see private money fund these projects that might spin-off health dividends because those funds need not come out of the public coffers.  At some point if and when any of these projects get closer to realizing their stated goals, the pressure to impose regulation will rise so that we can better understand and prepare for the ramifications of such success.

What do you think?

[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.]

Barbie’s Dream Body

by Theresa Spranger, Bioethics Program Alumna (MSBioethics 2012)

When you were a kid did you ever want to look like Barbie?  No?  Me neither…her breasts were too big and her waist too small.  I always figured she would break in half in real life, or at least have chronic back pain.

Blondie Bennett though, has always dreamed of becoming a real life Barbie doll.  She says that she was obsessed with Barbie as a kid and has modeled her life after the doll. Blondie-Bennett-poses-for-a-photograph-in-Los-Angeles-3161482

Now 38, she has had five breast enhancement surgeries and at this point makes Dolly Parton look “natural”.  She also has regular Botox injections and lip fillers to make her appear plastic and doll like.  Believing that “natural is boring,” she has gone to extremes to make herself into a living doll.

The most extreme of her actions is to participate in hypnotherapy sessions multiple times a week.  The goal of this hypnotherapy is to lower her IQ.  Her ultimate desire is not only to resemble Barbie in looks, but also to become brainless like the doll as well.  To hear Blondie in her own words, please watch this video.

In my humble opinion, it appears that this desire to become Barbie even to the point of brainlessness masks a deep psychological pain in this woman.  To purposefully work to forget your life and become ignorant of the world seems to me a red flag to deeper issues.

However, we aren’t here to judge or fix this woman.  I chose to write about her story for two reasons: 1, I found it fascinating and 2, I think it is an interesting way to highlight an important issue in our country.  The current trend in laws and policies makes us increasingly financially responsible for and beholden to one another.

Take the healthcare law for instance.  With health insurance being subsidized by tax payers, we have a financial interest in our fellow citizens staying healthy.  Right now Blondie’s rent is paid by a “special guy” and some of her procedures funded by other gentlemen in her life.  I presume that one day, as she ages, these gravy trains will cease to run.  Where then will her money come from?  What if she suffers back problems from the weight of her super enhanced bosom?  What if her treatments to become brainless work so well that she is unable to enter the workforce or even care for herself because of her forgetfulness?  Since she chose to put herself in that position, should American tax payers foot the bill for her future care?

If the answer is yes, doesn’t that give us a vested interest in her behavior now?  We see this idea play out in campaigns against: smoking, drinking in excess, eating junk food, not exercising, using recreational drugs, etc.  I am not saying that we should encourage these behaviors by any means, but since we are now financially tied together through healthcare, whether or not people stop the high risk behavior has a direct effect on the wallet of every tax payer.

Blondie Bennett may have a contingency plan for her future and continue to live a self-sufficient life.  However, her eccentric life choices are an interesting case study for how involved we should be in the choices of others when the future cost of those choices could fall on our shoulders.  Whether or not you agree with the changing healthcare system it will inevitably lead to new discussions and decisions regarding healthcare rationing as it relates to risky health behaviors.

Mulling over interesting and quirky stories like this one, could give us good practice for the deeper and more complicated questions we are sure to face in the future.

[This blog entry was originally posted in a slightly edited form on Ms. Spranger’s blog on March 18, 2014. Its contents are solely the responsibility of the author alone and do not represent the views of the Bioethics Program or Union Graduate College.]

Three’s a Crowd

by Theresa Spranger, Bioethics Program Alumna (MSBioethics 2012)

There is a new IVF (In Vitro Fertilization) procedure being developed in the United Kingdom.  The procedure aims to prevent diseases of the Mitochonidria.  These include certain types of Muscular Dystrophy that are genetically passed down from the mother.  This procedure would introduce DNA from a third parent by the transfer of the nucleolus from a donor egg.   99.8% of the genes of the resulting child would be from the biological mother and father.  Approximately 0.2% would come from the donor woman’s egg.  This would result in the child having 3 biological parents.

The whole idea is an interesting one and it’s a noble goal to want to protect these children from Mitochondrial disease.  However, I think it’s a “slippery slope.”  Yes, yes, there it is…the standard conservative argument for everything.  I hate making it as much as you probably hate reading it, but I think it applies in this case.

When you talk about genetically modifying humans (which is what we are talking about here), you open some very scary doors.  If a person’s genetics can be modified to correct a genetic disease at conception, could they be modified to ensure the child will be tall?  Or, to ensure she will have blue eyes?  The potential is “designer children,” or children whose genetic makeup has been specifically chosen.

I can already hear some of you out there: “That will never happen.”  “No one is going to pay that kind of money to pick out their child’s eye color.”  And so on, and so on.

For those who are skeptical of the idea, please allow me to give you an example of who this technique could be marketed to:

Kim Kardashian – a woman with more money than brains, whose maternal instinct didn’t stop her from naming her daughter North West.  Could you honestly tell me that someone like Ms. Kardashian wouldn’t want to create her “perfect” child?  Or, that no company would allow her to do this for the right price?

There is an epidemic in our society right now of “trophy babies.”  Some parents have babies and forget that they are tiny people.  That those children need to be nurtured and taught, and that one day they are going to need to be functional adults.  I think the ability to have “designer children,” would only make this trend worse.  It would allow those with enough money to choose qualities in their child like a little girl picks a doll from the American Girl store.  I don’t think this would be good for the child or society.

What if the “designer baby” trend then really took off?  What would society look like?  Naturally, there would be the haves and the have-nots.  People who could afford it would select for: intelligence, athleticism, beauty, etc., and the gap would widen between socioeconomic classes in our country.

As much as I would love to see a cure for mitochondrial diseases, any time we manipulate a person’s genes we are playing with fire.

[This blog entry was originally posted in a slightly edited form on Ms. Spranger’s blog on September 17, 2013. Its contents are solely the responsibility of the author alone and do not represent the views of the Bioethics Program or Union Graduate College.]

Dear Jhonny

by Theresa Spranger, Bioethics Program Alumna (MSBioethics 2012)

So, it’s been an interesting week in Major League Baseball; an historic take down of steroid abusers and one of my Tigers is among them.  It’s a 50 game suspension for Tiger’s shortstop, Jhonny Peralta, and over 200 games for New York Yankee, Alex Rodriguez (A-Rod).

In total, 13 players were suspended for purchasing performance-enhancing drugs (PEDs) through a Miami clinic.  This was the largest PED suspension in the history of baseball and many are praising Major League Baseball (MLB) management for their vigilance in cleaning up the sport.  I am not among those heaping praises.  Personally, I think the whole thing is for show and these players drew the short straw.

As fans we insist that our favorite sports get faster, better, and more exciting every year.  We want athletes of super human ability, but certainly don’t want them to take PEDs to get these abilities.  Dear sports fans…we can’t have it both ways.

Therefore, we must choose: do we want a pure, clean, wholesome sport with potentially fewer home runs, and less excitement, or do we accept the use of PEDs?

Until we answer this question honestly the game will never be “clean.”  Personally, I wouldn’t mind a PED free baseball game.  I tend to like sports in their non-enhanced form.  For instance, I find college basketball far more energetic and entertaining than the NBA games.  Is this true for the majority of fans however?

We say we don’t want PEDs in sports because they are unhealthy for the players.  The following is a list of side effects copied from the MayoClinic website:

Men may develop:

  • Prominent breasts
  • Baldness
  • Shrunken testicles
  • Infertility
  • Impotence

Women may develop:

  • A deeper voice
  • An enlarged clitoris
  • Increased body hair
  • Baldness
  • Infrequent or absent periods

Both men and women might experience:

  • Severe acne
  • Increased risk of tendinitis and tendon rupture
  • Liver abnormalities and tumors
  • Increased low-density lipoprotein (LDL) cholesterol (the “bad” cholesterol)
  • Decreased high-density lipoprotein (HDL) cholesterol (the “good” cholesterol)
  • High blood pressure (hypertension)
  • Heart and circulatory problems
  • Prostate gland enlargement
  • Aggressive behaviors, rage or violence
  • Psychiatric disorders, such as depression
  • Drug dependence
  • Infections or diseases such as HIV or hepatitis if you’re injecting the drugs

Having read the effects, what are your thoughts?  Do we downgrade the game to protect the health of our boys?  Do we openly accept and endorse the use of steroids, sacrificing the health of our players and potentially teaching bad lessons to young impressionable fans?  Or do we maintain this “don’t ask, don’t tell” approach to steroid use, every so often catching a player or two for a sacrifice?

I am a woman of clear opinions, lines, and values.  I do not like half-hearted solutions and problems being swept under the rug.  If we do not care about steroid use we should stop looking for it.  If we do care, we should crack down hard and rid the game of PEDs for good.  This short term suspension for players involved with a single supplier being lauded as the great clean-up of baseball is garbage.  MLB, do it right or not at all.

[This blog entry was originally posted in a slightly edited form on Ms. Spranger’s blog on August 9, 2013. Its contents are solely the responsibility of the author alone and do not represent the views of the Bioethics Program or Union Graduate College.]