Tuesday, March 31, 2009

The Real Dangers of Multimorbidity

When most people go to the doctor, they leave the office with a prescription for one or two medications to relieve the symptoms or cure a given condition. But what happens an increasing number of elderly patients leave the doctor’s office with prescriptions for 15, 18, or 20 drugs that are meant to cure the host of diseases that their doctors have diagnosed? The condition of having multiple, chronic health problems in known as multimorbidity. In the past, the public has perceived this predicament as rare, but in fact, it is not rare at all, and is rather common among elderly adults. Nearly two-thirds of people over age 65 and three-quarters of people over age 80 have been diagnosed with multiple chronic health conditions. These statistics place a significant weight on the issue of how to treat one, some, or all of the diseases at the same time in a single person.
At the center of this issue, lies a major bioethical component of drug treatment and patient care. People who are affected by multimorbidity linger in hospitals longer and experience a higher rate of preventable health conditions as well as overall shorter life spans. Most importantly, these types of patients are largely overlooked both in medical research and in hospital settings. Many research programs exclude people with more than one medical condition from volunteering because it complicates the research. So, there are currently not adequate opportunities and research initiatives for multimorbidity.
The lack of efforts to increase research on multimorbidity leaves the safe and effective treatment of these patients at a standstill. In effect, they are viewed by physicians and officials of the medical field as collections of malfunctioning parts that are nearly impossible to treat and have little or no significance in the field of medical research. This indifference towards multimorbidity becomes problematic as the numbers of people affected by this condition rises, especially as people age. So, the question is, should the physicians of the medical research field go out of their way to design potentially expensive, complicated trials that may have only a small possibility of ultimately figuring out a way to produce cocktail drugs for patients with multimorbidity, or should we simply turn our back on these helpless patients and let them waste away in our nation’s hospitals?

http://www.nytimes.com/2009/03/31/health/31sick.html?_r=1&ref=science&pagewanted=print

Man on Cheetahs

South African sprinter, Oscar Pistorius, dreams of having the chance to represent his country at the Olympics. What makes him different from the likes of Hussein Bolt or Ben Johnson, he had both legs amputated just below the knees at the age of 11 months. However, Pistorius does not consider himself disabled to the point that he refuses to park in a disabled parking bay. He believes he can do everything that a normal person can do, and more. This attitude has led him to strive towards competing against able-bodied athletes in the Olympics.

Pistorius sprints on a pair of J-shaped carbon fiber legs known as Cheetahs, which have allowed him to become the “fastest man without legs.” Although he was unable to qualify to compete in the Beijing Olympics, Pistorius has brought a new moral dilemma to competitive sports. Should disabled athletes be allowed to compete against able-bodied athletes?

It is argued that artificial limbs, such as Pistorius’ Cheetahs might give him an unfair disadvantage over his competitors by giving him a longer stride as well as being more efficient that the human leg. However, this is easily countered by the fact that prosthetics make Pistorius’ starts slower, he needs 30m to get a rhythm going, and he does not fair well in wet and windy conditions.

In order for Pistorius to compete in the Olympics we will need to rethink the rules and our current “image of man.” Right now people “don’t want to see a disabled man line up against an able-bodied man for fear that if the person who doesn’t have the perfect body wins.” Additionally, “the rule book says a foot has to be in contact with the starting block.” This poses an obvious problem for Pistorius.

Sources:
http://www.nytimes.com/2007/05/15/sports/othersports/15runner.html?_r=2&oref=slogin&oref=slogin

Monday, March 30, 2009

Now Just Hold Your Horses…

In the course of our discussions about the merits of genetic developments, it almost seems as if we are on the very brink of radical genetic changes. Eugenics seems so close; after all, we have already isolated many genes that point to particular traits. Our known genetic library is vast; we have truly entered into the stage of mass genetic mapping. All that is remains is a few simple manipulations using proven methods such as viral vectors, right? Unfortunately, as a recent article in the New York Times can attest, this goal is far from coming into fruition.

Columnist Olivia Judson puts it best when she writes, “We have accumulated huge databases on human genetic differences- but many of the differences appear to be more or less irrelevant. Scientists have now accumulated a significant amount of genetic data, but for the most part, we don’t know how to interpret it. Some gene translations are obvious; Down syndrome and Huntington’s disease come to mind as examples where the genetic coding is definitely known. But for many physical traits such as height and appearance, the connection between the genetic makeup and the physical results are still not there. This is surprising, considering that there has been much research concerning the phenotypes of genes and the subsequent sequences, but the fact remains that there has not been a direct translation done. One can only guess at the phenotypes using existing models (a tall person should have a height-favoring genes in known locations for examples). If presented with a full map of the human genome, no method exists to fully replicate a human according to the information. There are so many genes that influence a particular factor, but a single gene does not affect the phenotype very much.

On top of this, our vast computational abilities have only managed to decode a very small percentage of the total traits expressed by genes. For example, Judson brings up the fact that the components of height that have been discovered only account for three percent of the total variation. There is a significant percentage still waiting to be discovered. So it is best not to hope for any earth-shattering developments regarding genetics just yet; there is still a lot of work to be done.

Websites Relevant to the Post
http://www.nytimes.com/2008/08/17/opinion/17judson.html?_r=1

Past and Present


It seems like a simple question: Is it ethical to subject a patient to substandard medical care when there is better care available? Instinctively, most people would answer that it is not. This makes the practice of having patients treated by inexperienced residents rather than seasoned doctors a worrisome one. Is it really ethical to sacrifice patients' health in order to train doctors? It is a difficult question, and doctors legitimately worry about patients who might be harmed in the process of training doctors.


The worry over this ethical issue, however, creates an entirely new ethical issue. Because many doctors do not want to risk too much while training residents, they give residents too little authority and as a result too little confidence. Young doctors who are not permitted to stand on their own fail to develop the confidence and real experience necessary to become good doctors. Their future patients are then exposed to the consequences of this cautious, flawed training.


Is this ethical? Should future patients be sacrificed in order to guarantee the best possible treatment for current patients, or should it be the other way around? Nobody wants to be part of a medical trial run, with his life on the line; yet nobody wants to be the recipient of treatment from a doctor who does not display the proper level of confidence or good training, either. Both groups of patients seem to have the right to the best possible treatment, but their interests in this case conflict significantly.


http://www.nytimes.com/2009/03/17/health/17mind.html?ref=health

Tuesday, March 24, 2009

Cyborgs, where to draw the line?

Of course for me the Terminator, a ruthless calculating killing machine, is what first comes to mind when someone mentions the term “cyborg.” For the older crowd this word might call up images of The Six Million Dollar Man; but whoever or whatever you first think of when you imagine a cyborg, hardly anyone would think of the cyborgs that already walk among us – those with insulin pumps to manage their diabetes, those with pacemakers to control their arrhythmias, or those with a prosthetic limb that replaces a lost natural one. Simply put a cyborg is any human that lives and functions through a symbiosis of biological and mechanical systems. The point is the concept of a cyborg is no longer a concept of science fiction, but rather a term that may soon be widely applicable in biotechnology and modern medicine – a concept that raises questions about how dependent should we allow ourselves to become on technology? Where should we draw the line? Do we only allow mechanical implants for therapeutic reasons or for non therapeutic enhancements as well?

The divergence between our science fiction concept of cyborgs and the real life cyborgs is diminishing. Blogs and forums across the net are beginning to discuss this close drawing arrival of real life more complex and mechanized cyborgs. One such blogger, Chris Harris, on the IEET website (Institute for Ethics and Emerging technologies) is particularly excited about the potential for “re-engineering our motivations with brain implants.” Harris is animated about how a company named Medtronic is conducting clinical trials to test the effectiveness of using “deep brain stimulation” (DBS) delivered through an implant to treat depression in 200 patients. This implant stimulates the “ventral striatum (part of the human reward circuit).” The implant named “Reclaim” is already FDA approved for the treatment of OCD in 4,000 patients. The DBS Reclaim produces also works for patients with OCD because the ventral striatum is additionally associated with the neural loops that regulate mood and anxiety.

Now at this point in the blog nothing of real interest has been established since although this DBS does offer a new way for people to artificially influence their moods, that precedent was set long ago through the use of mood altering Psychopharmacology (drugs). Where the real innovation arises from is the fact that simultaneously animal trials are being conducted, which use the same DBS that Reclaim generates, interacting with the “reward circuit,” in order to produce “rewarding brain stimulation” (RBS). Reclaim could be refitted to produce this same RBS in humans. This RBS could be harnessed “as an operant reinforcer (a pleasurable reward) to motivate difficult behaviors in people lacking self-discipline.” From here Harris excitedly proposes how this technique could be used to increase the drive to exercise, learn, study, and accomplish other tedious but beneficial tasks.

Harris briefly mentions that there are ethical issues that need to be “articulated and discussed,” well why don’t I start it off. Would such an implant that motivates and encourages specific actions and habits diminish autonomy? Isn’t there great potential for subversive use if a Reclaim was implanted against someone’s will – a veritable long term means of mind control? What type of precedent does that set for us, in that we’re starting to allow machines to start directly thinking for us? One of the main issues that are discussed in science fiction that is embodied in cyborg characters is the loss of free will through an overdependence on technology. This new technology seems to be sending us right down that path…

Anyway speaking personally, besides the fact that the Reclaim technology to create RBS is far from perfect, I don’t see myself or anyone else going through the severe trauma of brain surgery and receiving an implant to get a little more motivation in the gym and the classroom; so for the time being I don’t plan on seeing any terminators walking down the street for quite a while.

Website cited:
http://ieet.org/index.php/IEET/more/harris20090323/

Monday, March 23, 2009

In the comfort of your living room...

When we think of scientific researchers, we normally picture some scientist clad in a white coat, goggles, and latex gloves, handling sterilized eppendorf tubes and $300 mechanical pipettes. Certainly and arguably that is the norm, researchers working under reputable institutions in regulated environments. But think back to your middle school years when you grew moldy bread in your refrigerator for science class! Potentially not a biohazard then, but a surprising trend towards "home-research" is growing in the United States.

Take 31-year-old Meredith Patterson, who lives in an apartment in San Francisco. On a relatively cheap budget of $500, she hopes to synthesize genetically modified organism for the sake of identifying melemine, which killed a number of infants in China last year, in yogurt. She hasn't had success so far, but cites being able to eat the yogurt afterwards as a plus. "She uses a plastic salad spinner as a centrifuge and Ziploc plastic bags as airtight containers for her samples."

Some are worried that these upstarts may be a danger to themselves or others, because of their fiddling with the unknown. It's feasible that newly created bacteria would have unintended properties or consequences, and these scientists don't exactly have the best resources to keep things quarantined.

The benefits of such home-grown research are tangible. Such opportunities foster innovative and creative thinking that isn't just restricted to the PhDs, which is what America is all about, right? More people in the field creating helpful remedies and therapies is realistically a boon to society, and some may appreciate it as a side hobby.

So where do we draw the ethical line? By and large these stay-at-home scientists aren't regulated or supervised; they buy most of the materials and equipment (that they didn't find in their pantry) from legal parties, but then set out on their own. I think this kind of research should be encouraged and not limited; any question of unfairness for "true" researchers should be put down, as discoveries made in the kitchen will never have the same clout as those made in a lab, and will never have the "breakthrough" capabilities. Those with malicious intent wouldn't really be stopped by red tape, and through legal means you would never be able to experiment on anything particularly dangerous. Given that there won't be any mad scientists running around, the potential benefits are such that this soft of practice would do well to become mainstream.

http://www.guardian.co.uk/technology/2009/mar/19/biohacking-genetics-research

Consulting or Advertising?

Johnson & Johnson’s company appeared all over the news with its latest scandal of
Johnson & Johnson consulted its director of the Johnson & Johnson Center for Pediatric Psychopathology Research of Massachusetts General Hospital, Dr. Joseph Biederman
According to Republican Senator of Iowa, Charles Grassley, Dr. Biederman reported only a small portion of the $1.6 million earned through consulting for drug companies to officials (NYT)
It is suggested that Johnson & Johnson’s had used its relationship with Dr. Biederman, a Harvard child psychiatrist who has established a well-known position in trials treating bipolar disease with risperidone, as a way of advertising its products. While on the other hand, Dr Biederman was accused with conflicts of interest while deciding to use preschool children in trials testing Johnson & Johnson’s antipsychotic drug. As a director, he believed such “studies of its medicines in children would yield results benefiting the company” (NYT). However, Josephine Johnston, a research scholar from a bioethics research institute was skeptical about whether or not the trials proposed by Dr. Biederman would indeed benefit Johnson & Johnson’s.

This case involving Dr. Biederman and Johnson & Johnson’s depicts the ethical issues revolving around conflict of interest as well as conducting trials with drugs on children. Since this type of marketing strategy, using individuals with credible status, is ubiquitous today, it is even more important that accurate consulting free from conflict of interest is ensured for the public’s welfare.

Source:
http://www.nytimes.com/2009/03/20/us/20psych.html?_r=1&ref=health

Saturday, March 21, 2009

Buyer Beware: The Hazards of “Stem Cell Tourism”

Now that the eight-year ban on government-funded stem cell research in the United States has been lifted, numerous policies and guidelines regulating this field are sure to come. Hopefully, these new laws will keep stem cell research productive and ethical. But even the most thorough regulations in this country cannot prevent desperate patients from seeking unapproved stem cell treatments elsewhere.

Many unscrupulous stem cell clinics in foreign countries offer supposedly breakthrough procedures without adequate research to back up their claims of safety or efficacy. At best, these treatments simply do not work, and the patient has spent tens of thousands of dollars for nothing. At worst, they may lead to potentially deadly side effects. These serious risks may be unforeseen due to lack of proper testing. Or, in the case of particularly nefarious companies, known risks may have been deliberately omitted or downplayed in the information provided to the patient.

This is a tricky issue to deal with. We cannot depend on foreign nations to ensure that research conducted there is ethical, so unfortunately, the responsibility must lie with the patient to make safe decisions regarding experimental treatments. We must focus on making patients aware of what constitutes reliable research. They should be informed of warning signs and red flags that likely indicate that a physician or clinic does not have the patient’s best interests at heart. And most of all, they should be reminded that if a treatment is illegal in the United States… well, there is probably a reason for that.

http://www.sciencemag.org/cgi/content/full/323/5921/1564

Friday, March 20, 2009

Jodi Picoult, the fortune teller.

In 2004, author Jodi Picoult, known for her heart-wrenching, made-for-Lifetime fiction, penned a sensitive narrative about sisters Anna and Kate. In My Sister's Keeper. Anna was conceived through in vitro fertilization with the express purpose of serving as a bone marrow donor for her sister who was diagnosed with acute leukemia at two. The harrowing tale pursues the ethical dilemma of whether a life should be created to sustain another.

Five years later, our knowledge of medicine has made this dilemma a reality. This October will see the first child "conceived specifically with the aim of helping an ill sibling." Essentially, the first Kate of our time. Doctors at Skejby Hospital in Denmark exploited the biotechnology of in vitro fertilization to scrutinize 200 of the mother's eggs for a match with the older sibling suffering from a bone marrow illness. 

The case is controversial to say the least, but the vertigo we experience from this story has little to do with breaking rules: this will be the first child born under Patrick's Act in 2004, which legalized the conception of genetic matches to save children in need of bone marrow donors. What then should bother us about creating "keepers" of sick children? We have been taught that medicine aims at every possible attempt to save a life, yet the Hippocratic oath is based on doing no harm. When employing a utilitarian perspective, we reasonably conclude that the pain and discomfort endured by the sibling's keeper does not outweigh the benefit of saving the life of a sick child. This view however puts us in ideologically dangerous territory: are we valuing present life over future life? In Picoult's 2004 version, the parents who had persistently pursued the birth of Anna end up less than sure of their original decision upon growing to love Anna as a child of her own. It would seem that informed consent plays a large role in such cases. Can we be made to believe that parents of severely sick children would consider anything besides doing everything possible to save their child? The choice to save a sick child they have already grown to love at the expense of a child they have yet to know appears fully rational yet unethical at the same time. 

By allowing such exploitative conception, we are condoning the desperate decisions of parents who have yet to consider the value of the child they are about to conceive. We are removing the force of law that commits parents to such necessary consideration. Of course, informed consent does not explain the whole of the issue, but merely presents one layer worth considering.     

Thoughts?
http://www.cphpost.dk/news/scitech/92-technology/45075-nations-first-donor-baby-conceived.html

Tuesday, March 10, 2009

Genetic Enhancements Are Wrong! Really?!

The blog post that Prof. Zwicker sent to our class earlier about the results of a survey asking people whether they would test their future children for certain genetic traits really raises some interesting questions. According to the survey “many parents said they would want to test for traits like mental retardation (75 percent), blindness (56 percent), deafness (54 percent) and heart disease (52.4 percent) … things like longevity (9.2 percent), tall stature (10.4 percent), and superior intelligence (12.6 percent)”. This certainly suggests that should genetic improvements considered non therapeutic become available they would not be so widely sought by the public, thus greatly limiting the effects to our moral values that genetic enhancements would have. But to what extend is this notion plausible. The post looks at the issue of how “pressure by society” would probably increase the percentage of people, who would like to genetically engineer their babies. The real question is however whether that really is the case.

It is in our nature to try to improve ourselves and everything around us as much as we can. We strive for better understanding, better life style, better control over our lives. Technological progress has definitely enabled us to achieve more and more ability to better ourselves. Genetic “enhancements” as they are called are simply the next logical step to go to. They are part of the healthcare system, providing us with healthier and better lives. Although many implications that genetic enhancements lead to, can be considered morally and ethically wrong at the very least, it is only because we view them through the lens of what we currently consider morally correct. Morality is quite far from being universal and radical changes in the ethics of a society are indeed a common phenomenon in human evolution. We should not worry about what is right and what is wrong since eventually society will figure it out one way or the other.

A Job to Get High For

Nicky Taylor is a journalist for the BBC, a job that has made her take her body and health to their limits. She uses different methods of research to the usual journalist, subjecting her body to various extremes, using it for experimentation. The outcomes of her research are very interesting, but is it ethical to use her body so loosely?

Nicky has gone from not cleaning herself in any way for six weeks to binge drinking five nights a week and smoking cannabis everyday for a month, and all this just for a documentary. In the case of the latter two, the body is not made to undergo such episodes, and it is no surprise that they will have detrimental effects on the body. As a mother of three, is it not irresponsible to put herself at such risk? How does the BBC justify allowing such documentaries to go ahead?

During Nicky’s “soapless experiment” it got to a point where her children refused to cuddle with her, and other parents would pull their children away from her, during “the face of a binge drinker” she had to go home to her children and take care of them whilst hung over. These self-experiments have a direct effect on her children not to mention the effects to her health.

Yet who are we to say that such self-experimentations are unethical? Yes, they go against the Belmont report in that there is no benefit to Nicky, and no positive outcome will come of her experiments. However she chose to participate in theses experiments, and her documentaries will make the public more aware of pertinent issues such as binge drinking and smoking cannabis. But is this public awareness of such issues worth the risk that she puts herself through?

Sources:
http://www.dailymail.co.uk/news/article-372102/Face-binge-drinker.html
http://www.dailymail.co.uk/femail/article-477378/Six-weeks-wash-The-soapless-experiment.html
http://www.dailymail.co.uk/health/article-545408/Superskunk-What-happened-woman-smoked-dope-daily-month-BBC-documentary.html

Monday, March 9, 2009

Patient or Research Subject?


Off-label prescription, a practice in which a drug is prescribed and used in a manner other than that which is approved by the FDA, may account for as much as 60% of all drug prescriptions written in the United States. Whether this is a good thing is in and of itself debatable, but the practice raises a different ethical question as well: is it human experimentation, and, if so, should it be covered in documents like the Declaration of Helsinki and the Belmont Report? Should there be guidelines dictating when and how prescription drugs can be used off-label?


In some ways, off-label drug prescriptions seem to be a clear case of human experimentation. The doctor prescribing the drug has no solid evidence, or at least no evidence vetted by the FDA, that the drug is safe or effective for treating the patient. Even if a drug works safely to treat one condition, it may not be a good choice for another condition for which it is not an approved treatment. Some doctors prescribe drugs off-label with purely therapeutic intentions; they feel certain that the drug will work for their patient's problem, even though it was not designed to treat it. However, many doctors also want to find out if this intervention will help patients who are in a similar state, and it is these doctors who make off-label drug prescription a borderline case of human experimentation.


I think that defining off-label drug prescription as human experimentation not only misses the therapeutic aspect of the practice, it also legitimizes it as a method of experimentation. This may increase the rate at which doctors use their patients to test new treatments. Although this would create a pool of normal patients that could be used to test drugs, it would also create bad experiments: experiments using one patient at a time, and probably with no placebo case. It would also wreak havoc on the physician-patient relationship, as physicians would start to see their patients as potential research subjects.


For these reasons, I think that it would be a bad idea to treat this issue as human experimentation, despite the undeniable similarities between off-label prescription and what is generally thought of as human experimentation. What is needed is to decrease those similarities, not legitimize them.


http://www.thedoctorwillseeyounow.com/articles/bioethics/offlabel_11/

Sunday, March 8, 2009

Ban on Stem Cells? What Ban on Stem Cells?

It seems that among the many changes sweeping through the Oval House, funding for the sciences has been one of the primary benefactors. White House officials have announced that President Obama will reverse the limits on stem cell funding that were put in place by the Bush administration. This policy, which will be formalized Monday, is a tremendous boost for universities and other facilities with stakes in stem cell research but could draw the ire of pro-life activists. Stem cells have been hailed as having the potential to treat many incurable illnesses. The controversy stems from the type of cells that are used, specifically the embryonic cells. Critics of the research claim that stem cells could be harvested from amniotic fluid or placenta. A human embryo does not need to be sacrificed. Proponents of the research claim that embryonic cells are by far the most promising of the batch.

I personally applaud President Obama’s choice to lift up the limits set by the previous generation. Hopefully, the enthusiasm by the scientists will mean an accelerated rate of research to make up for the eight years the field had been stagnating. The critics may have a point about the killing of a human being; it really depends on what developmental stage of an embryo that one views as being a human. However, they forget that these embryos were going to be discarded anyways, the products of failed in-vitro fertilizations. Stem cells have the potential to benefit a lot of people living in this world today. Isn’t there a need to help them first rather than cells that will never become a human?

Website Relevant to the Post

http://www.nytimes.com/2009/03/07/us/politics/07stem.html?ref=health

Saturday, March 7, 2009

Creating Life after a Death

Posthumous reproduction is becoming more common, with the increased number of soldiers being deployed and unfortunately, dying overseas. This type of reproduction refers to the implantation of a soldier’s stored sperm into a woman after he has died. Of course, this issue does not only pertain to soldiers, but to any man who is dying or already deceased due to a given circumstance. The pressing issue is: What rules should we implement regarding the impregnation of women with sperm that came from a man who is already deceased?
A soldier or a dying man can choose to store his sperm for his wife or girlfriend’s use in the event that he passes away. So, legally and morally, there seems to be nothing wrong with this scenario. The wife or girlfriend may decide to use this sperm to create a child in an effort to recreate the memory of the deceased husband or boyfriend. So, physically and figuratively, this newborn child will be a lasting combination of the mother and the father. In this way, the child’s existence serves as a sort of comfort for the grieving mother.
But, there have been cases where a deceased man’s sperm, at the request of wives or family members, has been taken from men who have not given their consent to the procedure. The issue here involves informed consent of the dying man, and whether laws should require a man to give this consent before he reaches a debilitated state. Sperm has even been taken from already deceased men who have unexpectedly died from heart attacks or strokes, because their wives or girlfriends want to become impregnated with their child.
Laws governing the use of sperm of the deceased and informed consent involving participation in saving sperm for later use need to catch up to this new, increasingly used procedure. We need to either define the decision to extract sperm to be a personal decision that belongs to the man, or a decision of the married couple, or even non-married couple. Furthermore, does the family play a part in this decision? The question is: where do we draw the line when determining who makes the ultimate decision to create a child that is the product of a living mother and a deceased father?

http://www.bioethics.net/articles.php?viewCat=2&articleId=196

Thursday, March 5, 2009

One step closer to perfection indeed....

One California fertility clinic in LA has just taken a huge step closer toward the perfect child. How close does that step put us you ask? …Well, what if I said it puts us just a few months away? Ok, so maybe perfection won’t be achieved quite that soon, but selection most certainly will be arriving. How’s choosing your baby’s gender, hair and eye color, even complexion for a start? That’s exactly what this LA fertility clinic, and it’s sibling NY City clinic, plan on offering coming this fall.
An enhanced PGD (pre-implantation genetic diagnosis), that was originally designed to screen for genetic disorders, will be used to filter for cosmetic characteristics, so that IVF patients will be able to choose the eye color, hair color, and complexion, through the same process and techniques that already allow them to choose their child’s gender. Although, “Not all patients will qualify for these tests and we make NO guarantees as to ‘perfect prediction’ of things such as eye color or hair color,’ said the clinic’s news release.” The clinics director, Dr. Jeffery Steinberg, says they will be able to predict gender with 100% accuracy and eye color with about an 80% accuracy. What will results like that cost their patients? The IFV procedure with this additional selection will run patients around $18,000.
Of course this has almost everyone concerned with bioethics in an uproar. This first step seems to have jumped us off of the theoretically ethical diving board, and plunged us straight into the murky waters of the real life deep-end. Many are outraged that precious resources are being devoted toward improving genetic cosmetics, while research toward therapeutic genetic cures are still in need of funding. Some are pushing the argument that designer babies starts us down a new road of discrimination, be it against gender or skin tone. Arthur Caplan says that, “When you get into trait picking for your child, you put expectations on your child no matter what the trait,” and of course with that sort of price tag it will only be available to the rich. Also, a number of other fertility clinics are taking a firm public stance that they will not move in this direction and they affirm that they will continue to only engage in strictly therapeutic pursuits.
One of the pioneers of PGD technology, Mark Hughes, is certainly unhappy about how his technology is being implemented, “I went into science and medicine to diagnose and treat and hopefully cure disease. The last time I checked, eye color and gender wasn’t a disease. There’s no pathology, no pain or suffering and no reason for doctors to be involved.” Hughes is comforted by his belief that no significant amount of people will sign up for this selection, “I don’t care if you are a billionaire; no one wants to go through the psychological and emotional pain of IVF for something so trivial. We need to have faith in our fellow citizens.”
Whatever conclusion ethicists draw they all almost unanimously agree that we aren’t ready for this step and that we need to immediately start drafting policy and legislation to address the issue, and take steps in the appropriate controlling direction before things get out of hand. But this pressing urgency to take action has been diminished as a direct result of the fertility clinic suspending its proposed project. Apparently the ethical outcry had an effect on Dr. Steinberg who said, “Though well intended, we remain sensitive to public perception and feel that any benefit the diagnostic studies may offer are far outweighed by the apparent negative societal impacts involved.” This turn of events is an affirmation that the consideration and debate of the ethical issues surrounding the advancement of biotechnology is indeed having a positive and shaping influence on its direction.

Sources:
http://www.kansascity.com/637/story/1066120-p2.html
http://blog.bioethics.net/2009/03/art-caplan-video-designer-babies-ethical/
http://newsblogs.chicagotribune.com/triage/2009/03/designed-baby-proposal-nixed-for-now.html

Tuesday, March 3, 2009

Is “Outsourced” Research Ethical?

Now more than ever, drug companies are going outside of the United States to conduct clinical trials. This raises some important ethical concerns, especially when trials are conducted in developing counties, or in nations whose health care systems are very different from ours. Recent studies found low rates of ethical review of research in developing countries and in China. One of the most serious concerns regarding “outsourcing” clinical trials to less well-to-do countries is the possibility that these nations’ poor could be manipulated by financial incentives and inadequate information about the study.

We have seen this scenario before. Both the Declaration of Helsinki and the Belmont Report state that the exploitation of a “disadvantaged or vulnerable population or community” as an easy source of test subjects constitutes unethical research. In all of our class discussions on the topic, I don’t recall anyone mentioning that a rich country could take advantage of a poorer one for the purposes of medical research. As far as I remember, we confined the issue to within a particular nation. This problem, however, has been magnified to a global scale.

Selecting which nations are eligible to participate in US-based clinical trials would certainly be viewed as discriminatory. However, countries such as Canada and Sweden are believed by bioethicist Dr. Ezekeil Emanuel (and undoubtedly by others as well) to be consistently satisfactory locales for research, so banning clinical trials of American drugs in all foreign countries is not the answer, either. But how are we to ensure that the research is ethical if it takes place on foreign soil?

http://www.nytimes.com/2009/02/19/business/19clinic.html?hp
http://content.nejm.org/cgi/content/full/360/8/816

One step closer to perfection?

Prospective parents will now be able to screen embryos for almost any known genetic disease using a new technique called "genetic Mot". Currently only about 2% of the genetic diseases known to man can be screened in this way.

This "universal test" developed by a team of British scientists led by Professor Alan Handyside should be available sometime this year. The test which will cost around $3000 involves a process called karyomapping which consists of detecting almost any genetic condition by using a cell from a two day old embryo. Not only can it test for muscular dystrophy, cystic fibrosis and Huntington's disease, but it can be used for testing for the risk of developing heart disease, cancer, diabetes and Alzheimer's in later life. Furthermore it also gives information about eye color, height and weight.

While researching for the essay about Jesse Gelsinger, I came across an interesting article by J Savulescu titled Procreative Beneficence: Why We Should Select the Best children. Savulescu argues that we have a “moral obligation” to “use all the available information and choose the option most likely to bring about the best outcome”.

He also argues “we have a moral obligation to test for genetic contribution to non-disease states such as intelligence and to use this information in reproductive decision-making.” According to Savalescu, happiness is measured by our experiences in life and a person with asthma, or a less intelligent person won’t have the fulfilling experiences that a person without asthma or a more intelligent person will have.  

 Once again, this new development raises ethical concerns and a whole new debate emerges. On one side, ethicists are concerned that this is just like the Nazi society where the weak were weeded out of the society. One the other hand some are arguing that as a parent one has a moral obligation to select an embryo with the best chance of the best life.

But the reality of this situation is sort of scary. As parents we will get the chance to eliminate the ‘least best’ embryos. We will attain a new kind of power, but are we ready to deal with such power? 

http://www.guardian.co.uk/science/2008/oct/24/embryo-research-development

Monday, March 2, 2009

"I had A's in high school..."

Ever felt unhappy with your image growing up as a teenager? Wanted bigger lips, a straighter nose, larger breasts? It seems that more and more minors are undergoing plastic surgery to correct their "inadequacies"; 205,119 operations were done on kids and teenagers 18 and younger, compared to 59,890 in 1997. Raised in a society with a constant bombardment of "the perfect image" by celebrities and models, It's hard not to imagine young girls might feel pressures about their appearance, but to be spurred to go under the knife at such a young age? It's more a reality now than ever before.

Kristen got breast implants as a graduation gift. Julia Marks' mother looked into plastic surgery for her daughter's nose when she was 6. Female self-esteem is as low as ever, but I feel plastic surgery is way out of line for people who can't even vote yet. You can diet, you can exercise, you can put on makeup, but getting yourself sliced up too far for girls whose bodies are still developing and might not understand the repercussions. Plastic surgery isn't just a one-time fix, followup procedures are often needed, and things might not go according to plan.

The motives are remarkably different. Adults get surgery "for that 'wow' factor," to pick up guys, whatever. Kids get surgery so they can feel normal when looking at their fellow classmates. Adults get plastic surgery to be different; kids get plastic surgery to be the same.

Proponents cite childhood bullying, eating disorders, and self-mutilation as things surgery can solve, but I don't think kids should give in. Talk to a counselor, get professional help, talk to your teacher, these are all options. And where are the parents in this? They need to teach self-acceptance instead of fulfilling their child's wildest whims. "You don't get self-esteem from a scalpel," says Dr. D'Amico.

http://www.nytimes.com/2009/01/15/fashion/15skin.html?pagewanted=1&ref=health

I apologize for the title, I couldn't help it :)

When Human Trials Come Before Animal Trials

A genetically modified rice trial financially supported by the U.S. National Institutes of Health had recently created uproar among scientists and ethicisits. The genetically altered rice, called Golden Rice, carrying higher than normal amounts of vitamin A and beta carotene was intended to treat vitamin A deficiency. While these elevated levels of vitamin A and beta carotene are potentially beneficial for restoring eyesight, it was also noted that overconsumption could lead to toxic effects. Despite such knowledge, scientists and ethicists were appalled that this rice had been fed to children ranging from 6 to 10 years old despite insufficient evidence of the rice’s safety in animal trials and had seriously violated the Nuremburg Code (Poulter)
The necessity of animal trials for safety evaluation before proceeding to human trials may seem obvious. As pointed out in a letter by the scientists protesting this trial: “Our greatest concern is that the rice…has never been tested in animals.” But Dr. Dubock, project manager of Golden Rice, defended the ethicality of the study by reasoning that “as humans are the designed beneficiaries of Golden Rice, the animal testing could not answer the questions posed” (Poulter).
Although humans and other animals are physiologically different, we cannot simply ignore potential warnings if they were presented in animal studies. Additionally, how far would we go in jeopardizing the safety of one population of humans to save another? In this case, it is risking the health of young children in order to vitamin A deficient patients. Even if children were replaced with vitamin A deficient adults, would the study be justified without previous animal trials?


Poulter, Sean. “British Scientists Condemn Using Children in GM Food Trials as Unacceptable.” http://www.commondreams.org/headline/2009/02/17-12