A Lesson from the “Ethically Impossible” Guatemalan STD studies

Yesterday the Presidential Commission for the Study of Bioethical Issues announced the release of its report titled “Ethically Impossible” detailing its investigation into the U.S. Public Health Service studies conducted in Guatemala in the 1940s that involved intentionally exposing vulnerable populations to sexually transmitted diseases without the subjects’ consent. They concluded that “the Guatemala experiments involved unconscionable basic violations of ethics, even as judged against the researchers’ own recognition of the requirements of the medical ethics of the day.”  Commission Chair Amy Gutmann said, “A civilization can be judged by the way that it treats it most vulnerable individuals…in this dark chapter of our medical history we grievously failed to keep that covenant.”

It seems to me that people are likely to respond to this report by saying, “Of course that was wrong.  No one would do that today.” But I think the most important lesson to learn from the report is why those who approved these obviously unethical studies did so.  The report shows that they justified what they did by citing the urgent need for proven methods to treat and prevent STDs in the military forces fighting World War II.  They were being good utilitarians.  When there is much good that can be done for many people by doing something it is easy to overlook those who are being hurt and whose inherent value as human beings is being ignored.

It happens when the need for organs to be transplanted causes people to suggest paying donors for their organs without considering the value of those who will be exploited.  Or when the desire to provide cures for spinal cord injuries or Parkinson’s disease leads people to destroy embryos to use their stem cells for research.  If we focus solely on what we can accomplish without being concerned about protecting those who are unable to protect themselves we fall too easily into immoral behavior.

Do-it-yourself DNA Analysis for $19.95!

Well, not quite, although a very cheap version may be just around the corner.  In this month’s edition of Wired (September 2011), one article reports that it is now possible to build your own DNA research lab for just “a few hundred bucks.”  The technology promises consumers the ability to turn “small samples of DNA into quantities large enough to analyze.”  The advantages to such technology are obvious; imagine having the capability of examining and identifying DNA in your own garage or basement.  Indeed, DIYbio (http://diybio.org/) is “dedicated to creating pop-up labs and doing biology outside the traditional environments of universities and industry.”  Currently there are DIYbioer groups all over the world, especially in the U.S.

In the past, the chief obstacle was affordability; the technology was simply far too expensive for the average amateur on a shoe-string budget.  The situation is changing, however.  Wired reports that “Behind the scenes, engineers and science enthusiasts are teaming up to mod tools and technologies and sell their inventions – or simply share tips on how to build them – to anyone interested.”  For example, PCR (polymerase chain reactions) kits, described as a “copy machine for DNA,” are attracting lots of attention.  According to DIYbio, for under $600, you can purchase a PCR to diagnose diseases or explore your own genome.

As with any technology, DIY DNA analysis is a mixed bag.  Professional PCR machines range from $6,000 to $17,000.  With a small investment, individuals interested in the technology can bypass the big corporations and achieve some of the same results.  Three years ago, high school students used DNA testing in the classroom and discovered that “sushi restaurants and supermarkets were mislabeling their fish” (an event known as “Sushigate,” Wired).

Then again, there is always the dark side to technology.  Suppose it becomes viable to detect one’s own genetic defects with the technology?  Or, what if it’s possible to discover someone else’s genetic defects?  Needless to say, the technology raises a couple of ethical questions:

*what should a person do with knowledge of a future genetic disease, especially if there is a gap between diagnosis and treatment, or if there is no treatment in the foreseeable future?

*then there is the question of whether a person has a moral obligation to inform others of genetic defects, such as one’s potential spouse.

Perhaps the most worrisome aspect to pop-up labs is the lack of regulation or ethical guidelines.  Also, what else can be done with the technology, and who is going to oversee the research and monitor the results?

As humans, we have this unfortunate tendency to be self-centered, to ignore our finiteness, to press forward without caution, to abuse technology to gain greater power, and to proceed without moral guidelines.  We do well to heed the frequently quoted warning of Hans Jonas, “Modern technology has introduced actions of such novel scale, objects, and consequences that the framework of former ethics can no longer contain them.”  Where then is the ethical framework to restrict the misuse of this technology?

On Licensing Abortion Clinics

 

Should abortion clinics be required to meet minimum standards for patient access, medical record-keeping, sanitation, etc., as are medical facilities in which invasive procedures are performed?  More than twenty states have decided that question in the affirmative, including Virginia, whose State Board of Health is set to vote this Thursday on licensing regulations that would affect clinics in which 5 or more first-trimester abortions are performed per month.

In noting the support of staunch pro-life advocates for the proposed regulations, the editors of The Washington Post have raised their pens in moral indignation, writing that “IF SOMETHING about anti-abortion advocates pressing for “safer” abortion clinics rings false to you, trust your instincts.”[1] The editors were specifically targeting the Family Foundation and  the Virginia Catholic Conference, arguing, in effect, that consistency demands that abortion opponents disavow any serious concern for the health of women who choose to abort their children. One cannot, the editors would have their readers believe, advocate both for the criminalization of elective abortion and for the health of women who opt for abortion.

Sadly, The Post demonstrates in this “editorial board opinion” the willingness of supposedly “upper-tier”journalists to chuck the most basic rules of critical thinking when defending some cherished social ideal or policy. Surely they know they have committed the classic error of posing a false dilemma, which assumes only two options exist when, in fact, others are possible. It is not only possible for opponents of abortion to care about the health of the abortion clinic’s clientele, but such is a present reality as pro-life pregnancy crisis centers across our country routinely demonstrate in their ministrations to the health and well-being of post-abortive women. A commitment to the sanctity of human life, most pro-lifers would argue, requires not only concern for the baby’s life, but for the mother’s as well. So, while there should be no expectation that pro-lifers would cease from their efforts to outlaw elective abortion, one ought not to be surprised to see them advocating for the health and safety of aborting mothers.

Truly, as it concerns the issue of consistency, advocates of abortion who would stand in the way of regulating abortion clinics as medical facilities are in a tough spot. They generally desire that elective abortion would be viewed as healthcare (see my post from June 27, 2011), but when it comes to treating it as such, they object. The Post’s editors are willing, they claim, to accept some regulations, but not those requiring a significant outlay of capital. To that, I suspect, many hospital administrators will simply respond “Welcome to our our world!” Meeting medical facility regulatory requirements is, no doubt, a burden, but it is one that must be borne out of concern for patient safety and well-being.


[1] http://www.washingtonpost.com/opinions/targeting-bortions/2011/09/01/gIQAS7Fa2J_story.html

The Pill Mill

My classmate Avi Viswanath posted a great article on Bioethically Speaking on the “pill mill” industry in Florida.  Pain-killer drug addiction is a big problem in the U.S., and Florida has become the hub for easily-obtained drugs.  In my own training, I encountered “Pez dispenser” physicians who gained the reputation as the “go-to” guys for medications like diet pills.  In one instance, a diabetic woman came to the office asking for diet pills that her primary care physician of many years would not prescribe her.  My attending, without preforming a physical exam, prescribed the pills.  Twice while I was training there, pharmaceutical reps came by for 20+ minute visits.  They seemed to be very friendly with the physician.

Read more about the physician-led “pill mill” drug industry at tamhscbioethics.wordpress.com.

 

Of horcruxes, stem cells, and the quest for immortality: the bioethics of Harry Potter

 

CBHD has partnered with author Austin Boyd and publishing house Zondervan for a suspense-fiction series entitled The Pandora Files. The first installment, Nobody’s Child, is about designer babies, body parts sales, and the thorny ethical issues they engender. It is a laudable effort to use the power of story to get people thinking about important issues; to show us rather than to tell us something is often the better strategy, and highlights the power of all the arts, whether visual, written, or performed, to touch hearts as well as minds.

I recently finished reading with my family one of the more wildly popular contemporary works of fiction, and found many points of contact for thinking about current bioethical issues. I realize that J.K. Rowling did not write the Harry Potter series as a bioethical parable, but the themes in her writing and the values her characters espouse are striking in their applicability.

(Warning: SPOILERS) In the series, an evil wizard named Lord Voldemort is obsessed with power, and with his own mortality. In the effort to overcome death, he resorts to what is the worst of imaginable dark magic: the creation of horcruxes. In order to make a horcrux one must commit murder, and the process causes irreparable damage to one’s own soul.

Harry Potter, a student wizard, is a leader of the resistance to Lord Voldemort. Guided by the Gandalf-esque wizard Dumbledore, he grows into his task over the course of seven very exciting (and very long) books. Dumbledore asserts repeatedly that the primary strength the resistance enjoys resides not in any magical power, but rather in the power of love — not the mushy, romantic sort, but the real thing,  self-sacrificing agape-style love. In fact, Harry goes knowingly to his death in order to defeat Voldemort; then, after a brief post-mortem sojourn in King’s Cross (who could miss that symbolism?) he returns and — well, I won’t spoil the entire story for the three people who haven’t read it or seen the movies.

Even in these novels written ostensibly for children, there are shadows of deeper and darker motifs, parallels to our world. The themes of thirst for power and desire for immortality are all too familiar to us, driving much of the most ethically questionable science. That Voldemort would resort to killing in his quest to live forever should have a familiar ring as well: we just make it sound much more civilized when we say “We disaggregate an embryo in a laboratory dish in order to obtain the stem cells that will be the key to regenerative medicine.” Voldemort does terrible damage to his soul each time he kills to make a horcrux;  who can tell what damage we do to our cultural soul when killing human embryos, our own young, becomes accepted by a large portion of the scientific and public community?

Again, Rowling did not intend to write a bioethical thriller as Austin Boyd is doing. But a person reading her books might just feel a bit more the danger inherent in the quest for power, and sense more keenly the contradiction and, indeed, evil, of killing another in order to benefit oneself. And when practices redolent of those values, such as embryonic stem cell research, are brought up, the reader might remember the words of one of the leaders of the resistance who said, “Every human life is worth the same, and worth saving;” and espouse Dumbledore’s prescription of self-giving love as a potent form of resistance to the evil around us.

Scripture and ethics (and transformation)

Christians have a foundation for ethics that can be seen to be more solid that that of others who look to mankind rather than God as their source for ethics.  The most direct way that we access that source of truth in knowing what is right and wrong is scripture. But how do we use the Bible in ethics?  Kyle Fedler in his book, Exploring Christian Ethics, suggests that there are five ways that Christians use the Bible in ethics.  His five ways are:

1)      Laws – finding specific commands in the Bible to follow

2)      Themes or ideas – finding principles to guide how we live

3)      Circumstances – finding a similar situation in scripture

4)      Character imitation – modeling after Biblical examples

5)      Character formation – transforming how we live

 

When I ask students which of these they think is most important they commonly choose themes or ideas, and I understand why they say that.  When we are searching for what is right to do in the unique issues of modern bioethics, we are commonly dealing with situations that those in biblical times never imagined.  We are able to find scriptural guidance by applying themes or principles we find in the Bible to our current dilemmas.

When they say that, I suggest to them that another one of the ways may be more important.  Frequently our biggest ethical problem is not that we don’t know what is right, but that we don’t do what we already know to be right.  Ethics is not just an academic exercise; it is about how we live.  That is where character formation comes in.

We are bent and broken people who too commonly incline toward what is wrong.  We need to be transformed.  That can happen when we meet in scripture the One who has the power to make all things new.

Who’s your Daddy?

Sometimes I ask my students if they know how many ways there are to make a baby.  At my last count, I identified as many as 19 methods to produce a baby through assisted reproductive technology (ART).  Some of the techniques are ethically troublesome because they result in surplus embryos or the destruction of embryos.  Other reproductive practices give rise for concern because they entail the commercialization of procreation (e.g., commercial surrogacy, egg donors, etc.).  It must be acknowledged that, in many cases, not only does ART remove reproduction from a loving sexual union between husband and wife, it makes the possibility of earning money the main motive for involvement in procreation.  Furthermore, in the case of children produced by donor gametes, there is the issue of maintaining a pretense of biological parenthood as well as apprehension about when and how to inform the child of its biological heritage.  Other practical concerns include the question of whether the child should have access to the donors, and how the child will explain his/her situation to others.

Just today there was a report of the discovery of 150 offspring produced by one sperm donor with “more on the way.”  Cynthia Daily, the woman who tracked down all the offspring observed that, “It’s wild when we see them all together – they all look alike.”  Then again, essentially the use of donors promotes procreation without the commitment on the part of the donor to parental responsibility.  As Dennis Hollinger observes in his book, Sexual Ethics and Reproductive Technologies, “Generally the sperm donor is anonymous and there is no bond between the mother and the donor, and no responsibility on the part of the donor father…”  Or, stated more bluntly by Daniel Blankenhorn in Fatherless America, “The sperm father completes his fatherhood prior to the birth of his child.  His fatherhood consists entirely of the biological act of ejaculation.  He spreads his seed, nothing more.  He is a minimalist father, a one-act dad.”

This is not to suggest that all ART is unethical.  But rather, as with any technology, it can be, and has been, frequently misused.  Unfortunately, there is little regulation of sperm banks and fertility clinics in general.  As Debora L Spar (president of ‘The Baby Business: How Money, Science and Politics Drive the Commerce of Conception’) remarked, “We have more rules that go into place when you buy a used car than when you buy sperm… It’s very clear that the dealer can’t sell you a lemon, and there’s information about the history of the car. There are no such rules in the fertility industry right now.”  http://timesofindia.indiatimes.com/world/us/We-are-family-One-sperm-donor-150-offspring/articleshow/9891308.cms

Thus, it stands to reason that stricter guidelines should be established to regulate the ART industry.  Without guiding principles, more children will be born not knowing the identity of their Daddy.

 

Cognitively Enhanced College Students

It’s likely that only a very small number of people are surprised to learn that Adderall, a methamphetamine-based prescription drug used to treat symptoms associated with ADHD, is often used by college students who do not have ADHD to help them study.

Perhaps even fewer people are surprised that most athletes take some form of methamphetamine before a game to help them stay focused.

So it should come as no surprise that often professors and researchers use Adderall to help them push through a deadline. American pilots often will use some form of methamphetamines to help them focus. Some lawyers use it to help prep for a big case.

A recent CNN report discusses the advantages and drawbacks to college students taking ADHD drugs to boost their grades.  Here are some of the key points from the article:

  • Adderall is abused more than marijuana on college campuses and is easier to get
  • 30% of students on college campuses have illegally used Adderall or Ritalin and the percentage increases with upper classmen.
  • 80% of upperclassmen in fraternities and sororities have taken Adderall or Ritalin
  • A Nature article that advocates regulated use of these drugs for improving performance suggests that these drugs would be better for the individual and society:  “In the journal Nature in 2008, a commentary by five researchers said, “We should welcome new methods of improving our brain function.” They added, “Safe and effective cognitive enhancers will benefit both the individual and society.””
  • The student in the interview saw marked improvement in his grades.
  • Students consider Adderall slightly more dangerous than Mountain Dew, and not nearly as dangerous as drinking beer or smoking.
  • The article points out several of Adderall’s side effects.

While the article touches on this, I am not writing to discuss the health hazards or side effects associated with stimulants such as Adderall or Ritalin or methamphetamines in general. I am also not writing about ADHD. I do think ADHD is an important topic, but that is not the point. My point is to ask should “study drugs” be legal for people to use?

The Nature article mentioned above seems to think so. However, after having recently read through another book on the eugenics movement, the language in the quote above sounds strangely familiar. More productive people could certainly benefit society, but how this benefits the individual is a stretch. For example, if everyone were to take cognitive enhancers, then those that were at an advantage have now gone back to being “average” or “sub-average.” The competition remains the same, only the standards are higher. The only time the individual obtains some benefit from methamphetamines is when he is one of the few using them while the standards are still based on prior capabilities. Having the advantage is relative.

Implied in the language of “benefitting society” is the idea of the perfectly productive person, or what a person should be. The message that “you are a better person when you are on drugs” should not be taken lightly. This idea assumes that a very narrow range of particular personality types are better than others. Then this personality is valued (perhaps implicitly) as the norm. As Carl Elliot astutely observes in his book Better than Well,

Perhaps some people are simply temperamentally unsuited to life at this fever pitch – drinking espresso in front of a computer screen, fax humming, speakerphone on, e-mail zipping in and out, lunch at the desk, people popping in and out of the office. Not everyone wants to live their life as if they were on the trading floor of the New York Stock Exchange, even if they could handle the pace. Maybe those who worry about Ritalin are really worrying that we have sped up the rhythm of American life to such a frenzied drum roll that those who march to the beat of a different drummer – or rather, who idle slowly rather than march – will simply be left behind (Elliot, Carl Better than Well 260, 261).

Replace that list with the college years: staying up all night with friends, going to parties every weekend, dealing with relationships, work, going to classes following by forty hours per week reading and studying for the 3 big tests that always seem to have the importance of determining your future all while averaging four to five hours of sleep on a diet with all of the nutrients that Raman noodles and pizza has to offer. And then the student in the interview complains about not being able to concentrate. Very few people can handle this pace, but beginning in college and carried on through adulthood, it is expected. No one wants to admit that he or she can’t handle it.

Secondly, in the article, the senior college student interviewed is quoted as saying that when he takes study drugs, “I’m more driven. I don’t focus on anything else…No distractions, no socializing, just on with it.” The ability to concentrate on one thing (something Lord Chesterfield considered a mark of genius), the ability to focus and commit to one project, the ability to manage your time, the ability to make a conscious decision for delayed gratification – These skills are some of the most important lessons learned in undergraduate and graduate school. With the aid of study drugs, students don’t learn these skills. What they do learn are the facts to pass the test. However, with the advent of Google, anyone can look up facts. Google has changed the way we do academics. No longer is the guy with the biggest database of facts the most valuable player in your company (or medical team, or research team), it’s the guy who knows how to find, filter, and assess the facts in such a way that he arrives at creative solutions. Most people decide to go to college in hopes of landing a good job after graduation. Thus far, there is no pill for ingenuity and resourcefulness. Facts are cheap, and the last thing an employer needs is a $50,000 database.

From IVF to human trafficking, and how liberal bioethics led the way (actually, it followed)

 

Ross Douthat of The New York Times wrote recently of The Failure of Liberal Bioethics to provide any ethical guidance in the area of reproductive technologies. He recounts how liberal bioethicists, for all their eloquence about monitoring and controlling new reproductive technologies, really just act as a rubber stamp for whatever anybody wants to do, finding reasons “to embrace each new technological leap while promising to resist the next one . . . You can always count on them to worry, often perceptively, about hypothetical evils, potential slips down the bioethical slope.  But they’re either ineffectual or accommodating once an evil actually arrives. Tomorrow, they always say — tomorrow, we’ll draw the line. But tomorrow never comes.”

This marked failure in line-drawing in years past is bearing grim fruit today. In the August 4th New England Journal of Medicine, George Annas wrote of Canadian legal efforts to regulate the international trade in reproductive medicine. In order to bypass local regulations and expenses, people buy sperm from one country, ova harvested from women in another country, and rent a woman to act as a gestational surrogate from a third country, to try to have a child. These are just the sort of practices against which “conservative” bioethicists, those concerned with human dignity, the meaning of procreation, and the commodification of children, have warned; and about which “liberal” bioethicists have opined, “Well, there’s a theoretical risk here, we’ll have to watch that —” and then watched as theory became practice and practice became madness. Annas writes of the fear of many that reproductive medicine is “becoming a branch of international trafficking in women and children.”

This fear is reality. Last winter the Wall Street Journal ran an article featuring PlanetHospital.com LLC, a California company that scours the globe to find the “components” for its “business line” of internationally trafficked reproductive materiel and technology. ”PlanetHospital’s most affordable package, the ‘India bundle,’ buys an egg donor, four embryo transfers into four separate surrogate mothers, room and board for the surrogate, and a car and driver for the parents-to-be when they travel to India to pick up the baby.” The international nature of this enterprise places it under the radar of any governmental regulation that might interfere with the “business line,” and there does not appear to be much internal ethical regulation on the part of the company itself; anything goes, even when an apparent pedophile wants to have a child. As chief executive of PlanetHospital Mr. Rupak says, “Our ethics are agnostic. How do you prevent a pedophile from having a baby? If they’re a pedophile then I will leave that to the U.S. government to decide, not me.”

If liberal bioethicists continue to have their way, the unthinkable practices of today will become the commonplaces of next week. Annas bears disquieting witness to this when he writes of ”acts that were once thought to be so universally condemned that prohibitions against them could be incorporated in an international treaty.  These prohibitions include the knowing creation of a human clone, the creation of an embryo from the cell of a human fetus or from another embryo, the maintenance of an embryo ex utero for more than 14 days after fertilization, the use of sex-selection techniques for a reason other than the diagnosis of a sex-linked disorder, the performance of germline genetic engineering, the use of nonhuman life forms with human gametes, the creation of chimeras for any purpose, and the creation of hybrids for reproduction.”

How many of these “acts that were once thought to be so universally condemned” are already standard procedure today? If liberal bioethics continues to have its way, which of today’s unthinkables will be the next California company’s “business line?”

 

(If you have time, read all three articles.  They are very disturbing. If you think that the work of CBHD is unimportant, you may just change your mind.)

The Patient-Consumer and His New Role

As some of you may know, I am not a caregiver. Due to this fact I try not to be too critical of the way caregivers act and perform their duties. This is not to say that at times I do not offer some suggestions based upon the historical practice of medicine and some theological-ethical considerations.

However, there is a somewhat recent truth about medicine that allows for harsher criticism. For, as much as it dismays me to say so, medical practice has become a consumer-driven vocation.

That’s right, I said it. I will give you a moment to take it in…

I know, I know, you are probably the exception to the rule.

I know it hurts.

I do not make this observation with malignant intent, but instead with the desire to be realistic about the profession as it is today.

Take a long hard look at what is going on in the medical profession…

From the last couple of weeks of my fellow bloggers’ blogs: making humans better/improving the human condition outside of need, fascinating new pharmaceuticals and medical procedures, and how medical technology has replaced the patient as the focus of medical practice. (I understand these are not proofs per se)

What we can see in this smattering of ideas is by and large what we are forced to confront as “bioethicists” of the day. Sure medicine is (was) about curing, but we are humans; so our (perhaps, darkest) desires have shaped the broadening applications of ‘helpful’ technologies. This, in part, has exploded the marketability of medical services and products.

The reality is we are no longer fighting to keep medicine from becoming consumer-driven—it is. And, it is most likely going to stay that way. However, this also means that consumers can redirect the marketplace of medicine.

Doctors do have a voice and power to fight it. But just like any product/service provider in the marketplace, they are, to a point, going to oblige the demands of the consumer. This is not necessarily seen in every transaction between doctor and patient (i.e. a bunion removal). It is seen, however, in the overall trends of the market itself.

And frankly, for too long we have solely concentrated on how doctors can try to take back the Hippocratic tradition. As consumers in the marketplace of medicine we have been given a powerful voice.

We ought to be informed about procedures, professionals and pharmaceuticals. We should feel free to call into question the guiding values of the professionals from whom we receive services.

I know it may seem paradoxical, but we as patient-consumers should try to preserve the founding principles of medicine by not reaching beyond the precipice of curing. We can choose with scrutiny according to the values of the Hippocratic tradition that once so proudly guided medicine.