To Play God

This past May, J. Craig Venter, one of the leading figures in genomic research, succeeded in transplanting a wholly man-made genome into a living cell. This was a stepping-stone for the field of synthetic biology that also drew it much public attention regarding the ethicality of creating life. However, the purpose of synthetic biology is more than just to create life. Because the artificial organisms can be genetically designed to carry out virtually any function, Venter’s work is potentially the solution to the energy crisis, the end of global warming, and the cure for cancer, among other things. So if these are only a few of the advancements we can make by further developing this field, well, why don’t we?

According to MSNBC’s Jeremy Hsu, one third of Americans are for a ban on synthetic biology. Venter and the scientists behind the new completely artificial organism are currently working with the National Institutes of Health to make synthetic versions of every flu vaccine ever sequenced. Six out of ten people support such an application because it would allow for a more efficient distribution of vaccines. However, the remaining four generally did not support such use because, as David Rejeski, director of the science and technology innovation program at the Woodrow Wilson Center, said, "The vaccine issue is one that was publicly mentioned and obviously would have significant implications if you rolled it out, because it would touch millions of people.” Because it is usually a case of “get vaccinated or get infected,” and there is no valid alternative to vaccination, an issue would be getting actual consent. Plus, if consent is likely, there is very little incentive to fully inform the public of the full implication of receiving artificially based vaccines. Other fears of those who oppose synthetic biological research are: possible use of synthetic biology to create biological weapons, moral issues with creating artificial life, and negative health effects for humans.

On the other hand, with the advancement that is synthetic biology, scientists can effectively simplify complex living cells so that they can work with just the essentials to create overall cleaner experiments and understand complex diseases like cancer. This alone may be worth the risks involved with such research for some people. Alternatively, synthetic biology may also allow us to breathe life into already extinct organisms. We currently possess DNA from organisms that have been dead for centuries that we are now able to transplant into currently living cells. This is a benefit that is more than just fascinating for the scientifically inclined. It opens up a seemingly infinite amount of new doors, for there is much to be learned from the organisms that are no longer found in this world.

The research is still in its early stages, and many of the ethical issues surrounding the field, such as the development of biological weapons, would not manifest for years to come. Therefore, to stifle the research prematurely would be unwise when there is so much to gain. However, periodic reevaluation of the practices involved with synthetic biological research would serve well to prevent the rise of ethical dilemmas.

Sources:

http://www.msnbc.msn.com/id/39101258/ns/technology_and_science-science/

http://ieet.org/index.php/IEET/more/maynard20100913

Are “Savior Siblings” Really Destroying Evolution?

If there were a chance that the miracle of birth could help fuel a medical miracle, wouldn’t you do it?

Jack and Lisa Nash of Englewood, Colorado did, and are now blessed with a healthy sixteen year-old girl and ten-year old boy. But their decision to use in-vitro fertilization (IVF) as a way to save the life of there eldest daughter troubles many and fuels the ongoing debate about the ethics and policies surrounding embryonic research.

Molly Nash was ten years old when her parents decided to use reproductive technologies to save her life. Born with Fanconi Anemia, an incredibly rare blood disorder, she was set to suffer with leukemia before she even reached her teenage years (1). But her parents, in a desperate search for a solution to the rare genetic disorder they both unknowingly carried, discovered the possibilities of IVF via Dr. John Wagner—a pediatrics professor and director in the Division of Hematology-Oncology and Blood and Marrow Transplantation and in the Center for Translational Medicine at the University of Minnesota (3). Because the only treatment for Fanconi Anemia is a bone marrow transplant, preferably from a sibling with identical tissue (HLA), he suggested the use of IVF to “produce several embryos, then genetically test all of them for both Fanconi anemia and the HLA type” (1). If everything worked to their advantage, they would be able to choose a healthy embryo and doctors could then use the umbilical cord blood of the newly created infant as a source of healthy bone marrow for Molly (1).

Thankfully, the Nash’s decision to use Dr. Wagner’s plan worked: Adam Nash was born a “savior sibling” and six weeks later, Molly finally received the bone marrow necessary to treat her disease.

But despite Molly’s survival and the successes of more than 6,000 cord blood transplants, critics remain skeptical (4). They believe that the Nash’s story, and the many others like it, are provoking the death of evolution and creation of “Frankenstein babies” (1). These critics base their arguments upon three main points: that these “savior siblings” are leading to a commodification of human life, that this embryonic reproduction will lead science and society down a slippery slope towards a common use of “designer babies,” and that upon developing past infancy, “savior siblings” are likely to suffer both physically and emotionally (2).

Furthermore, although Dr. Wagner stands strongly behind his research and hopes that “cord blood can be a donor source of stem cells for everyone regardless of age, size, or ethnic and racial background”, he has witnessed what can happen when IVF and embryonic reproduction goes awry (4). One of his patients aborted four of her babies when all the embryos failed to pass the necessary genetic tissue typing and in another example, his patient lost a pregnancy when amniocentesis, a genetic test for fetuses required as a preventive measure, ruptured her uterine membrane (1).

Though these unfortunate stories and strong critiques may push one to abandon the idea of IVF and continuing embryonic research, it is necessary to remember the lives saved through these procedures and acknowledge that the preceding stories of fatality come not from a fault in the technology itself, but rather in the misuse of science stemming from holes in the overall system. Stronger laws need to be put in place to help safeguard the patients participating in these procedures. Along with this, review boards need to be more involved in the process on an individual case-by-case basis as a way to curtail the worries of “designer babies”, commodification, and prospect of these “savior siblings” suffering later in life.

Because of Dr. John Wagner’s research and further experimentation in the field of umbilical cord blood transplants, Molly survived, the Nash’s have a second health child, “patients with diseases previously considered to be ‘incurable’” are now able to survive, even as this field is continuing to expand (4).

--------

Sources:

1. http://www.startribune.com/lifestyle/health/103584799.html?page=1&c=y

2. http://jme.bmj.com/content/30/6/533.full

3.http://www.stemcell.umn.edu/faculty/Wagner/home.html

4. http://www.cancer.umn.edu/research/programs/ucbwagner.html

Back to the Waterboard

In November, 2007, one of America’s most renowned doctors was recruited by the CIA to treat an operative in Langley, Virginia. The diagnostician took some brazen steps in curing the agent “John” and was successful in his often-criticized experimental methods. With narcissistic bravado, television’s most cynical physician Gregory House saved the day in “Whatever it Takes.”

House, however, is not your everyday diagnostician, or for that matter, your average CIA-affiliated doctor…and that’s just too bad, because compared to the medical researchers involved in government interrogations, Greg is Father Teresa. This past June, Physicians for Human Rights came out with a report detailing CIA experiments with prisoners post-9/11. As suspected terrorists are waterboarded at Guantanamo Bay, health professionals conducted research along the way, stopping interrogations to record data and take notes. They used a litany of techniques to “calibrate the levels of pain” and even tried using a saline solution for waterboarding to allow for repeated interrogation. Well, at least they made some discoveries along the way; why stop torture techniques when you can avoid killing the guy, right? Investigations regarding these “studies” are still underway, but it’s a shame to think half a century after the Nuremberg Code and the American Common Rule we are still concocting excuses and reasons for experimenting on individuals without consent. If that doesn’t sound morally vulgar and convoluted yet, consider that the results of these clandestine experiments are being used to justify the torture methods.

Then again, some would call me out on being impractical. Ethically cognizant perhaps, but foolishly mistaken. They would contend that these terrorists would be interrogated and tortured anyway, and with medical research alongside, why should this golden opportunity be for naught? After all, we’re not addressing the issue of torture here; we’re commenting on the use of experimentation if torture is a given.

To the wise folk who tout the banner of logic: let’s grab our vials and notepads and pay the next-door neighbor a visit when he’s sleeping…put him through an EEG perhaps and gain some insight into his dreams. And no need to ask…instead, just sedate the guy because he’d be counting sheep anyway! Ludicrous and absurd as this scenario sounds, the idea behind it is worse. These prisoners have rights, as well, and we can't just experiment on them unless they give consent. As University of Pennsylvania professor Jonathan Moreno says, “You can’t use people as laboratories.”

And of course, you have your share of bigots; the fiery CIA proponents who feel we have these terrorists in custody and their lives are in our hands. I mean, these rascals wanted to kill us! So we can do anything because as Americans, we’ve got the moral high ground. We can do “Whatever it Takes.”

But somehow, I feel that’s a level of chilling heartlessness even House would fail to reach.

---

http://www.nytimes.com/2010/06/08/opinion/08tue1.html

http://phrtorturepapers.org/

http://www.housemd-guide.com/season4/406whatever.php

Forced Social Media Deprivation: Unethical Experimentation In Disguise!

Provost Eric Darr of Harrisburg University of Science and Technology implemented an interesting policy for the week of September 13-17: he deprived all of his faculty and students on the University Network from accessing several popular social media websites such as Facebook, Twitter and AOL Instant Messenger. His reasons for this censorship, succinct, although misguided, were to remind his students what it was like to live in the "dinosaur age" of a disconnected world (Chapman), but was this really necessary? After all, argues the blogger Alex Priest of Technorati, these websites and others like them only became the cornerstones of the young American's world a mere five years ago, a time most competent college students are likely to recall (1).

However, regardless of Darr's motives, it is nearly impossible for a person informed of contemporary ethics of human experimentation to listen about this censorship with a calm facade. The learned ethicist would argue that such psychological experimentation is clearly lacking sound academic rationalization (Who will benefit from this? Unwilling subjects make reluctant recipients of the research in which they participate) powerful enough to justify depriving an entire community of an integrated part of their social infrastructure. This program tests the students' reaction to a social media blackout, making this clearly a psychological experiment, and Darr did not request informed consent. In addition, this was never submitted to an ethical review board (or else it would be immediately disallowed, says a university librarian [CalorieLab]). This type of program is therefore unethical experimentation, albeit of a relatively new breed, and must be understood as such to be prevented in the future.

According to an increasingly enraged student, this has only been the most recent of the so-called King Darr's transgressions against humanity (Hu), but similar experiments depriving students of social media have been going on for quite some time. Check the links below for more information.

Sources:

http://technorati.com/blogging/article/harrisburg-university-plans-social-media-blackout/

http://chronicle.com/blogPost/A-Social-Media-Blackout-at/26826/

http://calorielab.com/labnotes/20100909/harrisburg-university-social-media-blackout/

http://watchinghu.wordpress.com/

More social media experiments:

http://chronicle.com/blogPost/Professor-Challenges-Studen/7463/

http://www.startribune.com/entertainment/tv/87598062.html?page=1&c=y

http://www.tcudailyskiff.com/study-shows-that-facebook-decreases-test-scores-by-20-percent-1.2327746

No Complications: A Case for Preimplantation Genetic Diagnosis

“I will prevent disease whenever I can, for prevention is preferable to cure.” So goes the modern Hippocratic Oath (1), solemnly sworn by thousands of doctors every year. But what if prevention of disease encompasses more than a warning? What if it manifests itself before birth?

In vitro fertilization (IVF), a technique that assists otherwise infertile couples to having healthy babies, has been extended to ascertaining genetic health of the babies using preimplantation genetic diagnosis (PGD). Normal IVF procedure entails morphological examination of a few embryos to choose the one most likely for successful implantation; PGD simply extends this into genetics. If taken with a dose of anti-eugenic discretion, PGD has the potential of greatly increasing the quality these children’s lives. As such, it should be adopted into standard procedures for IVF.

The potential for benefit is massive – the embryos could be screened for virtually every possible genetic disease (including Huntington’s disease, sickle cell anemia, and predispositions toward some cancers). So far that makes us able to prevent about six thousand diseases from ever arising in a child’s life (2).

Consider Huntington’s disease. Being a late-onset neurodegenerative disorder, most potential parents do not even know they have the genes for it before they have children. They (and their children, if unlucky), will experience “uncontrolled movements, loss of intellectual faculties, and emotional disturbance” at some point in their lifetime (3). The bearers know they will slowly yet inevitably experience dementia and eventually loss of control. The question is not if the disease will rise. The question is when.

There is no known treatment.

But there is a way out. Huntington’s disease can be screened effortlessly with PGD. Children would not have to live life in fear of a disease that would eventually destroy their consciousness.

At the very least, PGD can be used to “avoid repeated termination of pregnancies following prenatal diagnosis…of genetic disease, which may have serious and long-term effects on women/couples” (4).

Though the benefits are compelling, concerns of potential abuse exist. Popularized in Andrew Niccol’s GATTACA, PGD was thought to be the beginning of a scientific form of eugenics. It was proposed that PGD could be used to select children with exceptional intelligence, height, or otherwise desirable traits (5). Much of this is inconclusive theory. Take, for example, genetic predispositions towards intelligence (6) – though genetics may play a small role in IQ, environmental factors (e.g. upbringing and schooling) conclusively play the leading role (7). Screening children for intelligence is a very abstract fear when taken in context of both genetics and environmental influences.

Gender selection of embryos presents a more realistic issue – PGD does allow selection of the sex of embryos. Though perhaps a problem in other societies, inclination towards any specific gender is insignificant in America (5). Furthermore, sex selection can even play a role in preventing certain gender-linked genetic diseases (8).

As long as parents consider IVF as an option, some embryos are discarded for morphological issues (i.e. those that would preclude successful implantation). Given this protocol is used for IVF, PGD does not contribute to any additionally discarded embryos – just better selected ones.

For this reason, PGD should be implemented for couples who choose IVF through necessity. PGD contributes no dilemma greater than those already presented through IVF, so to maximize the benefit of children conceived thus, genetic screening should be applied.

For parents with high risk of passing on a debilitating genetic disease, perhaps an option of PGD should be offered if genetic testing of parents necessitates it. The question funnels itself to this: if four viable embryos are in a dish and probability says three have Huntington’s disease, why leave the scenario to chance?

It must be remembered, though, that “It’s not about designer babies, it’s just helping people to have normal, healthy children” (4). Keeping that ethical medium in mind, doctors have a responsibility of preventing arbitrary PGD uses. Parents must have a sound basis of needing PGD so the constructive technique will not be implemented as a mere cosmetic – as opposed to preventative – measure.

Sources:

1. http://www.pbs.org/wgbh/nova/doctors/oath_modern.html

2. http://www.guardian.co.uk/news/2006/jun/19/topstories3.genetics

3. http://www.ninds.nih.gov/disorders/huntington/huntington.htm

4. http://hea.sagepub.com/content/14/1/41.full.pdf

5. http://www.time.com/time/printout/0,8816,989987,00.html

6. http://www.sciencedaily.com/releases/2006/04/060427161424.htm

7. http://www.associatedcontent.com/article/2398820/epigenetics_nature_versus_nurture_is.html

8. http://humrep.oxfordjournals.org/content/25/6/1354.long

Frankenfish...Coming Soon to a Store Near You

I, like many other people at Princeton, enjoy the occasional fish dinner after a long day of classes. Oily fish, like salmon, are high in omega-3 fatty acids, which are good for your brain and overall health. Unfortunately, my salmon eating days are likely to be numbered. The FDA has recently announced that they can't find anything wrong with a genetically modified Atlantic salmon that is waiting for approval to be marketed to consumers in the US.

Now, I wouldn't say that I am necessarily against eating food that has been genetically modified, but I have to draw the line at being used as a human guinea pig without my consent. No one asked me to participate in a trial to see if the new salmon is safe to eat, but if it is put on the market, I will have no way to know if the piece of 'farm grown salmon' on my plate is from a real fish, or a genetically modified one. In essence, the developer of the fish, AquaBounty Technologies, is trying to use the US population as lab rats for their product. Somehow, I can't quite see that as being entirely ethical. A better idea would be to ask for volunteers to try the new fish, just in case there is something in it that could be dangerous.

And from what I have read, there are reasons to be concerned. Most farmed salmon are fed with 'fish feed' which is laced with antibiotics used to keep the fish healthy and coloring agents to give farmed salmon the same color as wild salmon.

Although there does not appear to be anything harmful in the new genetically modified salmon, I don't think it is a good idea to use consumers as a test of whether or not the new fish is safe for people to eat. A study of those who have volunteered to try this new fish would not only be the most ethical way to determine the fish's safety, but probably the most accurate as well.

For more information about 'Frankenfish', try these links:

Original Story

Meaning of 'Genetically Modified' salmon

Opinion piece: For

Opinion piece: Against

AquaBounty webpage