Sunday, November 2, 2008

Would you volunteer?


The Human Genome Project (from wikipedia.org)

The Human Genome Project (HGP) was an international scientific research project with a primary goal to determine the sequence of chemical base pairs which make up DNA and to identify the approximately 20,000-25,000 genes of the human genome from both a physical and functional standpoint.

The project began in 1990, a working draft of the genome was released in 2000 and a complete one in 2003. The mapping of human genes is an important step in the development of medicines and other aspects of health care.

The HGP originally aimed to map the nucleotides contained in a haploid reference human genome (more than three billion. The "genome" of any given individual (except for identical twins and cloned animals) is unique; mapping "the human genome" involves sequencing multiple variations of each gene.

Goals

The sequence of the human DNA is stored in databases available to anyone on the Internet. The U.S. National Center for Biotechnology Information(and sister organizations in Europe and Japan) house the gene sequence in a database known as GenBank, along with sequences of known and hypothetical genes and proteins. Computer programs have been developed to analyze the data, because the data themselves are difficult to interpret without such programs.

The process of identifying the boundaries between genes and other features in raw DNA sequence is called genome annotation and is the domain of bioinformatics. While expert biologists make the best annotators, their work proceeds slowly, and computer programs are increasingly used to meet the high-throughput demands of genome sequencing projects.

All humans have unique gene sequences. Therefore the data published by the HGP does not represent the exact sequence of each and every individual's genome. It is the combined genome of a small number of anonymous donors. The HGP genome is a scaffold for future work in identifying differences among individuals.

Benefits

The work on interpretation of genome data is still in its initial stages. It is anticipated that detailed knowledge of the human genome will provide new avenues for advances in medicine and biotechnology. Clear practical results of the project emerged even before the work was finished. For example, a number of companies, such as Myriad Genetics started offering easy ways to administer genetic tests that can show predisposition to a variety of illnesses, including breast cancer, disorders of hemostasis, cystic fibrosis, liver diseases and many others. Also, the etiologies for cancers, Alzheimer's disease and other areas of clinical interest are considered likely to benefit from genome information and possibly may lead in the long term to significant advances in their management.

There are also many tangible benefits for biological scientists. For example, a researcher investigating a certain form of cancer may have narrowed down his/her search to a particular gene. By visiting the human genome database on the world wide web, this researcher can examine what other scientists have written about this gene, including (potentially) the three-dimensional structure of its product, its function(s), its evolutionary relationships to other human genes, or to genes in mice or yeast or fruit flies, possible detrimental mutations, interactions with other genes, body tissues in which this gene is activated, diseases associated with this gene or other datatypes.

Further, deeper understanding of the disease processes at the level of molecular biology may determine new therapeutic procedures. Given the established importance of DNA in molecular biology and its central role in determining the fundamental operation of cellular processes, it is likely that expanded knowledge in this area will facilitate medical advances in numerous areas of clinical interest that may not have been possible without them.

The analysis of similarities between DNA sequences from different organisms is also opening new avenues in the study of the theory of evolution. In many cases, evolutionary questions can now be framed in terms of molecular biology; indeed, many major evolutionary milestones (the emergence of the ribosome and organelles, the development of embryos with body plans, the vertebrate immune system) can be related to the molecular level. Many questions about the similarities and differences between humans and our closest relatives (the primates, and indeed the other mammals) are expected to be illuminated by the data from this project.

The Personal Genome Project (from wikipedia.org)

The Personal Genome Project (PGP) aims to publish the complete genomes and medical records of several volunteers, in order to enable research into personalized medicine. It was initiated by Harvard University's George Church and announced in January 2006.

The project will publish the genotype (the full DNA sequence of all 46 chromosomes) of the volunteers, along with extensive information about their phenotype: medical records, various measurements, MRI images, etc. All data will be freely available over the Internet, so that researchers can test various hypotheses about the relationships among genotype, environment and phenotype.

All data will be published along with the volunteer's name (since full anonymity can never be guaranteed anyway). An important part of the project will be the exploration of the resulting risks to the participants, such as possible discrimination by insurers and employers if the genome shows a predisposition for certain diseases.

The Harvard Medical School Institutional Review Board requested that the first set of volunteers included the PGP director and other diverse stakeholders in the scientific, medical, and social implications of personal genomes, because they are well positioned to give highly informed consent. As sequencing technology becomes cheaper, and the societal issues mentioned above are worked out, it is hoped that a large number of volunteers from all walks of life will participate. The long-term goal is that every person have access to his or her genotype to be used for personalized medical decisions.

In an interview in December 2007, Church stated that the sequencing effort for the above individuals had started and that the participants would get a chance to redact their trait data before publication. He also announced that the project was about to expand considerably and would recruit 100,000 volunteers in 2008; these would have to pass a test before they can participate, to ensure that they are able to give fully informed consent.

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Using the following resources:

The Personal Genome Project

http://www.personalgenomes.org/

Who Owns the Human Genetic Code?

http://academic.udayton.edu/health/05bioethics/00ammons.htm

Personal Genome Project Makes Available The Personal Genome Of Volunteers

http://www.efluxmedia.com/news_Personal_Genome_Project_Makes_Available_The_Personal_Genome_Of_Volunteers_27013.html

How the Personal Genome Project coujld unlock the mysteries of life.

http://www.wired.com/medtech/stemcells/magazine/16-08/ff_church?currentPage=all

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Your assignment is to respond to this prompt in an 11 sentence paragraph format. Publish your response as a comment to this post. When stating your opinion, consider issues of privacy, personal medical information, health insurance coverage of predisposed conditions, possible inheritance of genetic disorders to future generations etc.

“Would you volunteer to be part of the personal genome project?

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Questions? Ask in class or email me at doug@dougabshire.com. This assignment is due by Monday 1110. Thanks, Mr.A

11 comments:

Anonymous said...

If i was presented with the opportunity to volunteer to have my genetic code broken down, i would for sure volunteer. First off, if you are selected you are one of the few, so i think it would personally be an honor to have my code read. As far as privacy goes, the implications that follow, i really wouldnt mind, only for the fact that i volunteered to be in this ground breaking experiment, so i would accept all responsibility for doing so. If sharing my privacy, ties into my health insurance, such as if i find out i have cancer, i really wouldnt mind. But before hand i would try and take care of any illness or sickness that i could before the test so that there wouldnt be any misunderstandings, or better yet i would let my insurance know. when it comes to my genetic information being shared, i really wouldnt mind because 99,999 other people did the same experiment i did and their information is also being shared. I wouldnt mind sharing my medical information, because every family has some form of medical history...But overall i really wouldnt mind anything and i would for sure volunteer.

-Ricky G.

Seth Shreve said...

In science many advancements have been made and a lot of people have benefitted and many have been hurt as well. Yet i think that the Personal Genome Project (PGP) is something that holds a potential to help mankind a lot. In my life i have wondered what the future might hold and i have lost a lot of sleep worrying about what my life might turn out to be like. In this regard the project could alleviate a lot of stress about life for young people and it would also help potential parents to have a reasonable idea of what their child could look, think, and in some cases act like. Which i know would help me to feel much better if i was having a kid. The main downfall to this is that people might begin to look at your genetic profile and discriminate against you for it. An example of this is in health insurance and life insurance. If it appears you are at risk for certain diseases because of heredity some insurance companies would refuse to cover you because of the inherent risk. This can be overcome however if people agree to keep this information confidential which i believe would be the best choice for all people because of the danger that knowing too much about someone else can present. The ethical implications of this are that in order to keep this science safe and reasonable it must be kept somewhat safe for those who are processed unless they deign otherwise. This is the reason i wouldn't volunteer for this project, because the veil of anonymity would be denied, it's just too risky.

Anonymous said...

for the genome project i do not think i would like to participate. for one, its a severe invasion of my privacy. habing people view my genotype is considerably stupid. not only that the people who are veiwing my information might have a biased opinion on what there reading. also, why would i want someone knowing my family background, medical information, and god knows what else. i would never join this simply because of the invasion of my privacy.

Devin said...

Despite the intimate implications it would introduce into my life, I would volunteer to join the Personal Genome Project. The Project delves into the most personal aspects of one's life. It burrows to the very core of what makes us who we are. The knowledge of what I am inside, what twirls and twines in the inner depths of my body is thrilling and intoxicating. Yet, it is not without its wares. This knowledge would not only be accessible by myself, but by millions of people who wish to know these things. The future of my medicinal interactions would change. Never again would I wonder what allergens I may or may not have, what illnesses and ailments I may succumb to. I would heretofore be presented with the best medical care I could receive, excluding the quality of service via human interjection. Based on the current trend of business, whereby an employer checks deeply into the lives of potential employees before hiring, my business future could be changed on the whims of an employer who doesn't like a certain disposition I may or may not retain. This includes support such as Life Insurance or Medicaid. I could repeatedly turned away simply due to a certain gene that I had nothing to do with placing. In light of all these possiblities, both intriguing and daunting, I would gladly volunteer for the Personal Genome Project.

The Greatest said...

I would be hesitatnt to give the entire world my genetic code. The possibilities of what can be done with this knowledge is endless. This is an area of knowledge that is completely unexplored. To me, the risks are too high for the benefit of knowing about my genetic code. I can look in the mirror and to family members in order to see enough about my genetic code to satisfy my curiosity. Although it would be interesting to know exactly what I am made of, I don't trust the world with that information. There are plenty of brilliant people in the world that can figure out ways to corrupt this information. There is also a mystery behind who will be doing the testing on my information. As much as I would love an army of clones exactly like me, I wouldn't like the possibility of multiple clones of others. There is also the possibility that diseases can be specifically engineered for a set of genes. Nobody knows how far the technology could go, and I don't want to be test subject one.

Anonymous said...

Considering the certian implications and circumstances of being a personal genome project, I would not be involved in this expiriment. What is inside my body genetic wise I believe should be kept to myself, even if it could cure a disease of some sort. Many Im sure are for the personal genome project, but I feel that testing me for flaws that I may or may not have isnt really "just" even if it may save lives. If they found that my background had a history of cancer of some sort of disease, I would be at fault for any insurance coverages or many other disadvantages that I may be at with getting tested in this personal genome project (PGP). On the other side advancing human kind for our protection and development in the future would be a feat that not many could do, and if I had the genetic information in my body to do that I would, but as for being tested for a small project is none of my intrests nor concern.




MATT H...

1st Lieutent Blea said...

I would volunteer for the personal genome project.I would do for my futrue kids, so i kno it ther could be any birth defects. I think that it would be very usefull to know things like; personal disease histories, allergies, medications, as well as phenotypes, such as their food preferences or television viewing habits. i would also like to know how my genes and my personal traits are related.Although anyone could take a participant’s genome and his personal information and use them to infer paternity it would a risk i would take.

jacqueline said...

Even though the outcome of the personal genome project could benefit science and help out mankind, I would personally not like to be part of the personal genome project. To begin with, when a person accepts to be part of the personal genome project they are giving the approval for the public display of their genome. I would personally not like to have the entire world know what my genome is like. It would be kind of awkward having people know the composition of my genes. Secondly, by letting people see my personal genome they could use my information against me. For example, if I have a serious medical condition maybe an insurance company will over charge me for its use or even deny its services to me. Also, knowing how prejudice some people may be they will treat me with less respect or simply will just be rude to me.
Lastly, just the feeling of having extreme private information out in the open for the entire world to see is a bit intimidating. The genes that make me who I am shouldn't have to be exposed for the entire world to see. Sure it can be a very helpful resource but my medical history and of my family should simply be kept in private. In conclusion, I would personally not volunteer to be part of the personal genome project.

Maruahhh said...

Although it sounds wonderful to have your genetic code depicted from end to end, i wouldn't volunteer to have my genetic code broken down. To me its more about my privacy, I feel like the world does not need to know what is or is not in my genetic makeup. I feel like if there is or is not a disease that can i have potentially inherited from my ancestors it will eventually show up and hopefully it will be detected soon enough to get the receive the procedures necessary. Insurance companies would have an advantage with this and would not cover for the diseases that I am bound to acquire. Volunteering for this seems too generous, I seriously would consider it more if i got paid to do it. Why? Because genetic information is too valuable to just give away, no one else has the same coding as me and I don’t think it should just be given away. I understand it may be a great advancement in science and mankind but to me this is just beyond invading someone's privacy. The world does not need to know so much information about me.

Anonymous said...

If I could volunteer for the PGP I would.I think it wold be cool to know my genetic code.Knowing this information might help find a cure for certin diseases or if i have something bad in my code i could prepare for the worst. As for my privacy i dont really mind people knowing aabout my genetic code.The more the public knows about the human body and its misterious ways the more they wish to learn. Who knows maybe if people in the past had never offered to volunteer we would not have cures for the many diseases we have today.By volunteering for the PGP I would learn more about myself and my past/future generations.SUre it has risks but so do many other things in life.In the end its a personal choice and to me volunteering for the PGP would be a scary new interesting experiance so of course i would volunteer.:)

MARYANN M.

F3LiX said...

If approached with the opportunity to be a part of the personal genome project, I would have to decline. When apart of the PGP, your genetic information is placed out in the world for everyone to see. Insurance companies can use this to cut back on your coverage because of a previous ailment or genetic disease. I would just not want all of my information put out like that. It is a complete invasion of privacy. People will be allowed to look at your genetic history. Other people would also judge you if you had some social disease in the past such as mono.
Even though it could be potentially beneficial to mankind, it has not been studied enough. The information you give could be misunderstood. This could be very problematic. If the opportunity to participate in the personal genome project presented itself, I would not volunteer.