10/07/11 Introduction to Public Genome Projects
Learning Objectives: Students will acquire knowledge concerning Public Genome Projects and societal issues. Students will utilize this knowledge to undergo a cost/benefit analysis of genetic advancements. Students will conduct a debate concerning a hypothetical case and make a decision regarding this issue.
Students should access each of the links below and read the specific instructions below regarding the information students are responsible for learning on these sites.
Primary Genome Programs http://genomics.energy.gov/
1. Click on Genomic Science Program http://genomicsgtl.energy.gov/
· Genomic Science research conducts explorations of microbes and plants at the molecular, cellular, and community levels. The goal is to gain insights about fundamental biological processes and, ultimately, a predictive understanding of how living systems operate. The resulting knowledgebase—all linked through DNA sequences and freely available—will catalyze the translation of science into new technologies for energy and environmental applications.
· The Genomic Science research program focuses on developing technologies to understand and use the diverse capabilities of plants and microbes for innovative solutions to DOE energy and environmental mission challenges.
· The National Human Genome Research Institute has a lot of information concerning Research, Health, Education, Ethical Issues, and laws (www.genome.gov/LegislativeDatabase)
Be able to describe the potential impact areas of this research.
2. For ‘Human Genome Project’ information click on: http://www.ornl.gov/sci/techresources/Human_Genome/home.shtml
o Goals (found on this page).
o Gene Mapping: Finding the location of genes (loci) on the chromosomes.
o Genome: All of the DNA or genes.
o Proteome: All of the proteins.
o Identify the protein machines (the combination of one or more proteins and other molecules that carry out some function for the cell) that carry out critical life functions,understand what controls when and how these protein machines are synthesized.
o Medicine: Read the topics below on this web page. Only click on 'Pharmacogenomics'. Stop at Publications, Multimedia and Newsletter.
§ Pharmacogenomics: The study of how an individual's genetic inheritance affects the body's response to drugs. The term comes from the words pharmacology and genomics and is thus the intersection of pharmaceuticals and genetics.
§ Pharmacogenomics holds the promise that drugs might one day be tailor-made for individuals and adapted to each person's own genetic makeup. Environment, diet, age, lifestyle, and state of health all can influence a person's response to medicines, but understanding an individual's genetic makeup is thought to be the key to creating personalized drugs with greater efficacy and safety.
§ Diagnosing and Predicting Disease and Disease Susceptibility (The risk of acquiring a disease)
§ Disease Intervention
§ Gene Therapy: Inserting new genes into an organism to treat disease.
o Click on Ethical, Legal and Social Issues. Read each of the following on this web page. Stop at ‘Articles’. A few of the issues:
Privacy and confidentiality.
Psychological impact and stigmatization.
Reproductive issues.
Uncertainties associated with gene tests.
Implications regarding responsibility, free will vs. genetic determinism.
Health and environmental issues.
Commercialization of products.
3. Click on Microbial Genomics http://microbialgenomics.energy.gov/index.shtml
“…DOE’s Office of Biological and Environmental Research (BER) has sequenced hundreds of microbial genomes and tens of microbial communities having specialized biological capabilities. Identifying these genes will help investigators discern how gene activities in whole living systems are orchestrated to solve myriad life challenges.”
Answer:
Why Microbes?
Potential applications?
The Debate
I. Ethical Inquiry and Public Policy
II. Huntington Disease
III. Jonathon Noss
IV. 3 Committees
V. Instructions for the Debating Committees
VI. Instructions for the Hiring Committee
VII. SELF-TEST
I. Ethical Inquiry and Public Policy
When the interests of all involved parties cannot be advanced, and when the interests of some are advanced at the expense of others, ethics and public policy are employed to address the concerns.
Terms and Concepts
Ethics:
Public Policy:
When should LAWS be enacted?
Company Hiring Decisions:
· Companies must take into consideration a person’s rights. A ‘Right’ is a…
· Discrimination: Justified v. Unjustified
Ethical Argument
There are 4 steps in preparing for an ethical argument:
Step 1: Accumulate Information.
Step 2: Evaluate the information
-Look for possible bias
Step 3: Make arguments (justifications)
-Be aware of competing, well-reasoned answers
- Be aware that individuals have different value systems
-Be wary of irrefutable answers
Step 4: Analyze the arguments
-Are the arguments well reasoned (logical)?
-Should everyone accept our reasons as important or logical? Why?
-Whose rights are more important? Why?
-What are the consequences of our position? Cost/Benefit Analysis.
II. Huntington Disease
Huntington Disease (HD) is a devastating, degenerative brain disorder for which there is, at present, no cure or effective treatment. HD slowly diminishes the affected individual’s ability to walk, think, talk and reason. Eventually, the person with HD becomes totally dependent upon others for his or her care. Huntington Disease profoundly affects the lives of entire families: emotionally, socially and economically.
Named for Dr. George Huntington, who first described this hereditary disorder in 1872, HD is now recognized as one of the more common genetic disorders. More than a quarter of a million Americans have HD or are “at risk” of inheriting the disease (if they have an affected parent). HD affects as many people as hemophilia, cystic fibrosis or muscular dystrophy.
Early symptoms of Huntington disease may affect cognitive ability or mobility and include depression, mood swings, forgetfulness, clumsiness, involuntary twitching and lack of coordination. As the disease progresses, concentration and short-term memory diminish and involuntary movements of the head, trunk and limbs increase. Walking, speaking and swallowing abilities deteriorate. Eventually the person is unable to care for him or herself. Death follows from complications such as choking, infection or heart failure.
HD typically begins in mid-life, between the ages of 30 and 45, though, rarely, onset may occur as early as the age of 2. Children who develop the juvenile form of the disease rarely live to adulthood. HD affects males and females equally and crosses all ethnic and racial boundaries. Each child of a person with HD has a 50-50 chance of inheriting the fatal gene. Everyone who carries the gene will develop the disease. In 1993, the HD gene was isolated and a direct genetic test developed which can accurately determine whether a person carries the HD gene. The test cannot predict when symptoms will begin. However, in the absence of a cure, some individuals “at risk” elect not to take the test.
From: Huntington Disease Society of America website http://www.hdsa.org
A. Inheritance
The mutation causing the symptoms is a REPEAT of 3 nucleotides (CAG).
-If the repeat is found fewer than 36 times, HD does not occur.
-If sequence is repeated 37-86 times, HD will occur.
-Rarely, 36-40 repeats are borderline. Most do show clinical manifestations, but in rare, borderline cases, the disease is not fully penetrant.
-In the case we will be debating upon, the individual in question has the repeat 45 times.
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B. Expression
Having one allele will result in Huntington disease (it is DOMINANT), but...
1. The age of onset of symptoms,
2. The age of severe symptoms,
3. The age of death,
-All highly variable
C. Progressive degeneration of nerve cells in the central nervous system
1. Memory loss, depression, irritability.
2. Loss of muscular control, involuntary jerky or writhing movements of the arms and legs and facial grimacing.
3. Personality changes, including inappropriate laughter, crying, episodes of anger, and bizarre, almost schizophrenic behavior.
4. Death: Two regions of the brain are destroyed; death usually
occurs in the 50s after several years in a vegetative state.
III. Jonathon Noss
Jonathon Noss is a top-notch microbiologist. Now 30 years old, he has spent several years working in one of the best research laboratories in the world and has developed an excellent reputation as a creative researcher and hard worker. Following the birth of their son six months ago, Jonathon and his 29-year old wife decided it was time for Jonathon to seek a job that could help them settle down and become financially secure. Thus it was with great interest that Jonathon read the following advertisement in a scientific journal:
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This was the type of job Jonathon had always hoped for, and he applied immediately. Before long, PIE invited Jonathon to come to its headquarters and interview for a position on this special research team.
Dr. Peters, the head of the research committee, led a series of interviews with Jonathon and three other applicants. Although the other three applicants also were well qualified, they did not seem to share the same determination and drive as Jonathon Noss. She listened carefully when Jonathon presented his latest research findings to PIE scientists. They, too, were impressed with Jonathon’s knowledge, research skills, and potential for contributing to the special goals of the research team. Jonathon sounded like the type of applicant who could have a long and productive career with PIE, and he seemed to be the sort of team player PIE was seeking.
Because Jonathon was a top-quality research scientist, there was a high likelihood that his knowledge and research efforts might result in the type of discoveries for new drugs and treatments that were the goal of this special research project. Such discoveries and products could improve the quality of life for countless individuals and dramatically increase earnings for PIE. The investment by PIE of several million dollars to set up and support a laboratory for Jonathon and to pay his salary while he worked seemed like a good one.
There was, however, one additional bit of information that Dr. Peters had before her as she considered her recommendation to the Hiring Committee. As part of the application process, Jonathon had submitted a blood sample to determine his genetic profile, as had all other applicants. The profile showed that Jonathon had the allele for Huntington disease (not borderline). When asked about this, Jonathon revealed that he knew nothing about his family history because he had been adopted as an infant. After thorough genetic counseling about the implications of this news, Jonathon still wanted the job at PIE.
Dr. Peters faced a tough dilemma. Should she recommend that PIE hire Jonathon Noss? On one hand, she knew that his skills as a scientist fit well with the special research project. He could help PIE develop new products and bring in a potentially large amount of revenue from his work in the laboratory. This would be to the advantage of PIE in the tough and competitive world of pharmaceutical manufacturing. She also knew that the goal of the special research team was to do long-term research, and no one could predict how long it would take to discover new drugs and treatments. She could not be certain how long Jonathon would remain a productive scientist. PIE was investing large sums of money to support this special research project. Medical and other costs such as disability insurance, once Jonathon developed symptoms, also weighed heavily as she considered whether to hire Jonathon. Therefore, Dr. Peters decided to create two committees. These committees consisted of PIE employees that would argue for and against hiring Jonathon before the PIE Hiring Committee. The Hiring Committee could then make an informed, well-reasoned decision.
IV. 3 Committees will be formed
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A. Should Hire Debating Committee: This group prepares arguments for hiring Jonathon.
B. Should Not Hire Debating Committee: This group prepares arguments against hiring Jonathon.
These two ‘Debating’ Committees will debate whether or not to hire Jonathon Noss.
C. Hiring Committee will moderate the debate and make decisions based on the arguments of the two above ‘debating committees’.
VIII. Instructions: Should Hire and Should Not Hire Committees
Day 1: Debate Preparation
In class preparation
· Groups will examine the Possible Topics page.
· Divide the topics among the members of the committee. Each committee member will research and prepare information to bring to the debate concerning his/her assigned topics. After the debate, EACH COMMITTEE MUST TURN IN ONE OF THESE FORMS WITH THE NAMES OF THE STUDENTS ASSIGNED TO EACH TOPIC.
· Both debating groups must appoint a primary spokesperson that will present the initial two minute argument to the Hiring Committee (Final Hiring Committee). It is recommended that the spokesperson has a history of excellent attendance. If the spokesperson does not show up for the debate, the group will have to quickly appoint someone just before the debate. However, even the most conscientious person has emergencies. Therefore, an alternate that also prepares an initial argument should be chosen.
· Brainstorm together, and discuss the issues and consequences related to each topic that may be relevant to the hiring or not hiring of Jonathon Noss (as many as time allows).
Before Day 2 preparation
· Acquire information particular to your topic and/or prepare arguments using your topic. You must have at least one outside source.
· Complete the Student Information Form (ALL areas). Each individual student will turn in this page.
· The primary spokesperson and alternate must prepare an outline/notes for the initial argument.
· Make a large, easily read name tag.
Day 2: During the debate
· Groups will sit on opposite sides of the room.
· The Hiring Committee will call on the spokesperson of each Debating Committee to present their two minute (maximum) initial arguments.
· The Debating Committees will argue the Possible Topics introduced by the Hiring Committee. Do NOT argue LEGAL issues until the very end when the topic is introduced. The Hiring Committee will make an INITIAL decision based on the merits of the case, alone. Only after making this initial decision will LEGAL issues be debated. After Legal issues are debated, the Hiring Committee will retire to decide on a FINAL decision based on all of the topics debated.
· Student evaluation depends on everyone speaking. On the other hand, no one should respond to more than 3 topics other than the ones you were assigned. If you do, it indicates that you are over-dominating the discussion.
· The Hiring Committee will call an end to the debate and make their decision.