Panayiotis Zavos: I've Cloned a Human!

Whether the news stories on Panayiotis Zavos’ latest efforts to clone a human embryo are a hoax or not, there is no doubt that a tremendous amount of scientific progress has been made since the 1997 announcement that a sheep had been successfully cloned; cloned primates and pets and the creation of induced pluripotent stem cells and human-nonhuman chimeras are just a few of the scientific discoveries that get us closer everyday to the prospect of a cloned human being. The ability to radically alter human reproduction raises fundamental questions regarding the nature of our humanity and the character of our society.

Thousands of scientists, scholars, journalists, religious leaders, and policy makers have debated and discussed the ethical implications of a wide range of reproductive technologies, citing ethical concerns from safety, kinship disruption, and the commoditization of reproduction to concern for genetic diversity and the threat of eugenic application. While the benefits of many reproductive technologies – genetic testing, therapeutic cloning, genetic germline modification, and chimeric modeling, to name a few – are still being debated, reproductive cloning is nearly universally opposed. Most believe it currently poses unacceptable safety risks.

The opposition to reproductive cloning has led to a growing effort to ban the practice at a state, national, and international level. All this activity led us to consider the question: Is there a consistent theme in the ethical language used to justify banning reproductive cloning? Does the language reflect the moral values and common goals of the world community or does it unwittingly set the stage to undermine procreative liberty and scientific progress by appealing to vague ethical principles that serve a broader political agenda?

Before we support a worldwide ban on cloning, we need to carefully examine the ethical language used and be sure it reflects the common good. We must watch carefully as human dignity is employed to ban human reproductive cloning, for it can set the stage for banning other reproductive technologies such as IVF, genetic testing and genetic modification as well as therapeutic cloning.

You can read our full analysis here.

Conference Announcement: Living in the Genetic Age

SAINT LOUIS UNIVERSITY SCHOOL OF LAW

21st Annual Health Law Symposium

Friday, March 20, 2009
8 a.m. to 4 p.m.
William H. Kniep Courtroom

Advances in genetic technology raise a broad range of legal, social and ethical concerns. Fear of genetic discrimination remains an issue, as evidenced by the passage of GINA, the Genetic Information Nondiscrimination Act of 2008, which limited the use of genetic information by employers and health insurance providers. Other concerns include the meaning and uses of genetic knowledge in the face of uncertain choices; the significance of genetic information for ideas of self, family and community; and the challenges of genetic enhancement and personalized genomic medicine. This Symposium gathers leading experts and scholars from fields including law, medicine and anthropology to discuss these and
other challenges of living in the genetic age.

Details and registration:

Call: Mary Ann Jauer (314) 977-3067
Click: law.slu.edu/genetics
Write: jauerma(at)slu.edu

They say "It's All In The Genes" but do I really want to know?????

The Coriell Personalized Medicine Collaborative
“It’s all in the Genes: Researchers Uncover your Genetic Profile”


Would you really want to know what is down the road for your health?

Genome Profiling Project…..This innovative science takes a sample of my saliva and tests the DNA for certain genes that are associated with specific diseases. Some prominent healthcare institutions are taking part in this groundbreaking project. Healthcare facilities such as Fox Chase Cancer Center, Virtua Health Care, and Cooper Medical Center have thrown their hats in the ring on this one.

I have some concerns about this. Let me tell you about them:

Accuracy: Who says these tests are accurate? Have we done any studies up until now that prove that these tests would be reliable? Would I be worrying unnecessarily about a disease that I may never acquire?

Confidentiality: The Coriell Institute for Medical Research seems to have solved this issue by keeping participants’ medical data in an anonymous form to protect their privacy. There is absolutely no way a person’s identity could be revealed? (heard that one before!)

What if there is no diabetes gene, can I still get diabetes? Or….can I err on the side of probability of not getting it based on the absence of a specific gene?

What does it mean if they find a gene that is “medically actionable”?
According to what I’ve read the genetic makeup that will be revealed will be on that which is “medically actionable”. In other words, if there is no cure for the disease (or treatment) then it will not be revealed to the participant? So I won’t know if I am a potential candidate for Alzheimers?

What about the future? Some experts say that this will be standard at birth and that everyone will have a genome mapped at birth and it will be part of your medical record. Although they also state that physicians will need to have a patient’s permission prior to accessing the data.

It’s a win-win situation according to Dr. Dwyer from Virtua Health Care. Dwyer states that “the physician is more attuned and patients would be more engaged because they now know they have a risk. That combination can change behavior” (or kill a person with worry).

This is obviously not for everyone. I am actually considering becoming a participant in this groundbreaking study. The thing that is holding me back is when I go to hit that key to tell me if I have the genetic makeup to develop diabetes, will I worry myself right into a full blown case of diabetes? My other reservations are that I’m downright frightened that what I may find out may be more than I want to handle at any given moment. Life is hard enough dealing with our every day stressors. Now, knowing that I could develop breast cancer, heart disease, etc. down the road will just add more to my stress level and then I’ll probably just have a massive heart attack and it will be over anyway….so what’s the point?

For more information on this project, go to www.coriell.org.

Will Genetic Engineering Ruin Sports?

I will have to begin in mentioning that I am not a sports nut. I do like to watch the occasional baseball and football game. Despite this, the topic of sports is going to be may main topic. But not just sports in curiosity who will win the next Superbowl, but sports in concern with genetics. Where will the idea of sports go with the introduction (and advancement) of genetic engineering? Will such technology, which has high hopes in enhancing ourselves to be better humans, ruin the very idea of sports? With the playing field be fair? Or will it destroy the very structure of competition? If so, will the law forbid such technology, or forbid any altered child from entering sport?

I'm sure most of our readers have heard of the recent headlines of steroid use in the MLB. The uproar of the use of steroids only sparked more interesting questions when concerning with the future of genetic engineering. People were upset and felt cheated that such athletes took performance drugs to better their game. Can the upset of steroids ban any idea of future genetically altered athletes from entering sports? It is known that steroids have some major side effects that can harm the taker. For a better look, check the ESPN special of steroids: ESPN Special On Steroids


Genetic technology is ever progressing, and every year that passes brings us even closer to the technology of genetic engineering. We already have super mice!; Marathon Mice, Schwarzenegger Mice, and my favorite, Doogie Mice. For a side note, most of what I will be discussing will be in the hypothetical. In other words, there are some concerning issues as to what we will be able to alter in our children's genes. In addition, Im already assuming that such technology is "perfected" so to say. I believe most will agree that such technology in general should not be practiced until all the kinks are well, fixed. I also would like to add that I am assuming that this technology will be widely accessible.

So, if you have the option to choose certain traits for your children; (already taking the precautions to remove any defects and/or diseases), what will you choose? Every parent would want the best for their child. Either it be a trait that the parents believe to be beneficial, i.e. physical appearance, or a trait that is in general beneficial no matter what scenario, prolonged-memory. In addition, you can better befit your child with physical agility, such as strength, or the ability to run fast. This alterations and enhancements do not have to be linked with the parents desire to "create" an athlete, (though this can happen), but such alterations can lead a child to consider such a course. If so, what will the precautions be? At this moment I am going to drift into Lance Armstrong. My point will be seen, I assure you.


Lance Armstrong is a perfect example of a great athlete. He shares a lot of the same attributes that other bicyclist share, but one thing that he does have differently is his unique lactate levels. The average among bicyclists is between 12 and 20u L/Kg. Armstrong's level is maximum 6u L/Kg. (information found on Answers: Armstrong) This means he feels less physical fatigue, allowing him to continue long distances without losing strength. Is this fair to the other players? Or is it just part of the game? Granted, most would agree that though you might have the tools, its how you use it that shows your worth. In any who, would it be wrong of parents to genetically alter their child to have these attributes? Or is it fair for Armstrong only because he got it through chance (chance meaning it accrued with no interference or received it through his parents with no interference). Would you look at Armstrong differently if you knew he received this attribute deliberately through genetic technology? Would you feel that he should be stripped of his awards and banned from the sport if he did. In addition, would you believe that all altered individuals be banned from participating in any sport?

If genetic engineering is "perfected", and is seen as a due course of helping our children, what would happen to the legality of those enhanced. Would the law ban some individuals because they were altered prior to birth? In all honestly, I cant see the law banning this technology entirely (maybe some aspects of enhancement). Im at the moment curious as what will the law do? Will they ban altered athletes entirely, or have a separate league? Or will the law do nothing and allow such individuals to enter. Will this then require other non-enhanced athletes to comply? Athletes are already posthuman cyborgs and we celebrate this. It is likely that greater use of this technology will seep into other aspects of culture, as we begin to embrace more and more enhancements. Sports might soon become peculiar for resisting such developments and, in the meantime, will be placing athletes at greater risk by forcing them to enhance behind closed doors.�??¹ Either way, sports competition will take some dramatic hits and misses as genetic engineering progresses into the future.

There is a novel written by Kevin Joseph called The Champion Maker (2005). The story offers us a fictional look into what might occur if an exceptional athlete was found to be genetically altered. It deals with reaction and attention of the courts.

1: Andy Miah, Engineering Athletes, The Sun News (Myrtle Beach, South Carolina, USA), 18 May 2008.

First Female DNA Decoded

[Cross-posted from the Blazing Indiscretions blog, hat tip to blogger Jay Vos]

The first decoding of DNA in a female was done in The Netherlands, reports DutchNews.nl. A red-haired, 34-year-old Dutch woman has become the first woman in the world to have her compete DNA unraveled, genetic scientists at Leiden University Medical Centre announced on Monday.
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[T]he sequencing data of a female provides more insight into the X chromosome. 'Because the X chromosome has to do all the work in one half of the population - the males - selection has been tougher during human evolution,' according to Van Ommen. 'This means the X chromosome is less variable.'

Male sequencing data has already been unraveled from Jim Watson, co-discoverer of the double helix structure of DNA, from researcher Craig Venter and from two Yoruba Africans. 'It was time to balance the genders a bit,' news agency AP reported Van Ommen as saying.

Decoding the DNA took six months, but the scientists point out they could only use the sequencing equipment when it was not being used for other projects.

More on the need for science education

Ran across this story from The Scientist (free registration required) about the results of a an essay contest sponsored by the American Society for Human Genetics (ASHG). The contest elicited high-school students' understanding of human genetics. The results are dispiriting, to say the least. Here's an outtake:

"When people who cannot have children and want their own from their own blood, meaning having their genes, what will stop them from putting some cells into a cow to get their child?"

"Genetics create a perfect being. Change the genes. Make that child perfect. There's no better solution to an impending health care crisis. A perfect child means that health care can be focused on an aging generation of people. What we can have is a sea of people who all look brilliant, who are all smart and who all have perfect eyes, nose and lips. It's a perfect society, what more could we want?"

Here's the original article from Genetics, for more information about the ASHG contest.

Consider this, too: these are the responses of students who were willing to participate in an essay contest about genetics. What must be the level of understanding among those who wouldn't bother? Clearly, CLEARLY, we need to do a better job of K-12 science education.

If there's a silver lining here, it might be that ethical questions could serve as a "way in" to discussion of the science, especially for students who may have little interest in science per se. In both the examples above, students' grasp of the science is lacking, but there are clues that suggest they have some sense that there's a moral element involved.

Bringing the genome home ... but why?

This story in the Washington Post gives a decent overview of the growing number of firms out there who promise to improve our lives by giving us insight into our individual genetic profiles. Current players who offer screening include 23andme, Knome (which its founder, Harvard geneticist George Church, wishes we would pronounce "know-me"). Then there are those who claim to provide genetically-based information or advice, ranging from ScientificMatch.com (your DNA is used to find you a suitable date) to Genelex (which offers a mishmash of testing options, ranging from diet advice to predictive testing for periodontal disease) to Navigenics (which claims, "your genes offer a road map to optimal health"). I'm not even going to get into the outfits that offer to trace individuals' ancestry.

Here's a fact about all these businesses: not a one of them is subject to FDA oversight. So all these claims about health benefits, etc., resulting from their services can be completely false (or at least, not based on evidence), and nothing can be done about it. If you read even a *tiny* bit of the scientific literature on genetics and "personalized medicine," you will be struck by how few experts make such claims, at least for the near term. Instead, they talk about the promise of genetics ... while acknowledging that there's an awful lot we don't know. (Along these lines, see this commentary from last week's issue of the Journal of the American Medical Association, featuring none other than the head of the National Human Genome Research Institute.) Bottom line? Given that most health conditions and risks seem to be multifactorial, involving multiple genetic factors as well as environmental influences that we don't yet understand, this stuff is a long way off.

In the meantime, though, consumers should be protected from grossly overstated or unproven claims. Whether that falls to FDA or to someone else (though the Consumer Protection Agency probably has enough work to do at the moment -- lead paint in toys, anyone?), it seems to me the Feds ought to step up on this one.

New Vistas in Mapping the Genome of Life

In the continuing quest to get one step closer to making man-made life a reality, genetic engineering researcher Dr. J. Craig Venter has announced that he and his team have manufactured the entire genome of a bacterium, through a clever "stitching together" of its chemical components, a feat being heralded as "watershed" for the emerging field called synthetic biology.
This genome is more than 10 times as long as the longest piece of DNA ever previously synthesized. What it means is the possibility of scientists to be able to one day design an organism on a computer, press the “print” button to have the necessary DNA made, and then put that DNA into a cell to produce a custom-made creature, a possibility certain to raise many ethics questions in the minds of scholars and laymen alike.

See details of this emerging technology in this from the NY Times.

Should genetic researchers be able to share your DNA?

As promised (or warned--I guess it depends on whether you think this is an interesting issue), here is another thing to think about with regard to genetic biobanking studies.

So: say you've agreed to participate in a research study that is trying to identify whether there is a genetic contribution to breast cancer. In this particular study, the researchers will follow a cohort of women who have not developed breast cancer at the time of enrollment. The researchers will take blood samples and do physical exams periodically. They will also sequence your DNA. As time goes on, some number of women in the study cohort will develop breast cancer, and some won't. The researchers will look at the DNA sequences to see whether there are different patterns in the genetics of the women who develop cancer as compared with those who don't. If they find such patterns, they'll go on to investigate what those specific mutations do.

This kind of research, which is called a genome-wide association study, GWAS for short--because it's looking for associations between genetic patterns and disease--is a lot like a fishing expedition. (You can learn more about these studies in this archived Science Friday audio panel with Ira Flatow.) How GWAS's work has a couple of important implications. One is that, for such studies to work at all, researchers need really big datasets to sift through. Another is that the same dataset could be used for lots of different purposes.

For these reasons, and for efficiency and cost-effectiveness reasons as well, the National Human Genome Research Institute (NHGRI) is trying to develop plans to pool or share such datasets across different projects.

Think back to our breast cancer study example. If you'd consented to participate in that study at your local research university, how would you feel about your (de-identified) information being used by researchers somewhere else? Would you feel that you needed to be offered the chance to opt out of this "wide data sharing?" Or would you feel that your original consent covered such subsequent uses?

Here's another permutation to think about. Say the researchers did the breast cancer study, and in the course of that work they noticed that there seemed to be a correlation between certain genetic patterns and alcoholism or schizophrenia. Would it be ok with you for them to pursue this line of inquiry using your genetic information? Would you feel that you needed to be offered the chance to opt out?

You can read about the NHGRI policy, and the scientific community's reaction, in The Scientist, here. Salon.com ran an article a few years ago about a much smaller open-source approach to genetics, here (which is where the nifty kitty photo came from).

Creation of New Life Forms: the next step for DNA?

This article fascinated me. Scientific breakthroughs, especially revolving around the use of DNA science--and the ethics of it--always gets my attention. But this article was a mixture of fascination, awe--and fear. There also remained the lingering question in my mind of whether this could really be true--that researchers are indeed considering taking this next step--or if just simply a rumor spawned by someone's overactive imagination.

You can read the Washington Post article, and decide for yourself: whether the prospect of creating new life forms--synthetic life forms--from artificial DNA should be considered a scientific breakthrough--or a major mistake, and what questions it raises about science, religion, ethics and the very essence of genetics.

Update on the Genetic Nondiscrimination Bill

One of the things that both conservative and progressive bioethicists have agreed on is the merit of GINA ((the Genetic Non-discrimination Act). And there was great hope when it passed the House easily and may of us saw it as a potential solution to the injustice of genetic discrimination. So what's happening with the bill? Seems it has been stalled in the Senate, single-handedly by Sen. Tom Coburn (R-Oklahama). The scoop, according to Wired, is that Coburn is saying that it could place too much strain on businesses.

Where's the outrage on this?