[Type text]
genETHICs
The Scenario
Please note that the character in the following story is fictional.
Genetic information: right to privacy or right to know?
Breast cancer is the most common cancer that occurs in women. Some people, both men and women, have an increased risk of developing breast cancer due to an alteration of a gene called BrCa1 (Breast Cancer 1 gene). This gene alteration is linked to early-onset breast cancer and can also increase an individual’s risk of ovarian cancer or prostate cancer. Only about five to ten percent of people with breast cancer have this altered gene.
Jane is a 49-year-old woman whose father carries an altered BrCa1 gene. After learning this, Jane decided to see a genetic counsellor about whether or not she should be tested for the same BrCa1 gene alteration. The genetic counsellor and Jane discussed many issues, including; what a BrCa1 gene test result would mean for her health, the treatment options available, and the possible impact of her result on family members.
Jane chose to have the BrCa1 gene test. The test involved having a small sample of blood taken that was analysed in a laboratory. The results of the test showed that Jane had the same altered BrCa1 gene as her father. This means Jane’s risk of developing breast cancer during her lifetime is as high as 80%. For someone who does not have an altered BrCa1 gene, the lifetime risk of developing breast cancer is around 8%.
Jane and her doctor discussed her surveillance options, which include screening mammography and regular clinical check-ups. The doctor also talked about the implications of her having an altered BrCa1 gene for her children, Cathy (22) and Robert (26). Both children have a 50% chance of having inherited the same gene alteration. For Cathy, inheriting the altered BrCa1 gene will put her at increased risk of getting breast and/or ovarian cancer (just like her mother), while Robert will be at increased risk of breast and prostate cancer.
Jane tells her genetic counsellor that she understands what her altered BrCa1 gene result means for her children. She has decided that she does not want to worry her family, so for the moment will tell them that she does not have the gene alteration and will tell them the truth when the ‘time is right’.
Jane’s behaviour is of concern to the medical staff involved in her case. The staff have an obligation to respect and protect Jane’s privacy and maintain the confidentiality of her test results. On the other hand, they could prevent significant future harm for Cathy and Robert because they are aware of important medical information.
Feric
HRE 4M1
GenEthics
Marshall McLuhan
Catholic Secondary School
[Type text]
genETHICs
Essay question
• Discuss the ethical issues raised in this scenario. What should Jane’s doctor do with the medical information they have about her carrier status? What if this gene could be altered or repaired for Robert’s and Cathy’s children?
HINT: Essays will be marked using the Essay Assessment Guidelines. Follow these guidelines when writing your essay.
Essay Assessment Guidelines
Essays will be assessed according to the following criteria (weighting):
1. Provide a brief overview of genetic treatment and enhancement – include the differences between treatment and enhancement, the ethical implications of genetic treatment versus enhancement? (15%)
2. Demonstrate a basic understanding of the ethical issues of genetic manipulation:
• How can “good” and “bad” uses of gene therapy be distinguished?
• Who decides which traits are normal and which constitute a disability or disorder?
• Will the high costs of gene therapy make it available only to the wealthy?
• Could the widespread use of gene therapy make society less accepting of people who are different?
• Should people be allowed to use gene therapy to enhance basic human traits such as height, intelligence, or athletic ability? (20%)
3. Evidence of thought about whether genetic information is different to other medical information and whether it belongs to the family rather than to the individual. (10%)
4. Demonstrate a basic understanding of the ethical considerations of “Duty to Warn” and “Confidentiality”. (25%)
5. Discuss the possible benefits and harms that may arise if:
• Jane does not share the information with her family;
• Jane chooses to share the information;
• Jane’s doctor breaks patient confidentiality and informs Cathy and Robert of their risk. (30%) Your essay must demonstrate an understanding of the ethical issues and provide justification for your views. The
content, quality and organisation of your arguments in relation to the question asked, will determine your success.
Essays must be no more than 2000 words, including references and quotes. Essays should be typed using Times New Roman font at 12 point and double-spaced. Information and any diagrams must be appropriately referenced using the MLA method (library.curtin.edu.au/referencing/mla.pdf).
Feric
HRE 4M1
GenEthics
Marshall McLuhan
Catholic Secondary School
[Type text]
genETHICs
Glossary
Surveillance: is the close observation of patients who are at high risk of developing cancer. Surveillance aims to detect the development of cancer early and allow for treatment to prevent the spread of the disease.
Screening mammography: an X-ray of the breast that is used to detect changes in breast tissue that are too small to be found by a doctor or the patient.
Risk: The probability that an event will happen.
Gene alteration: changes in the DNA sequence that may or may not cause a disease or condition.
Genetic counselling: is a communication process that helps individuals and families affected by, or at risk for a genetic condition understand and deal with their situation. Genetic counsellors are health professionals with
training in genetics and counselling. Their main aim is to help their clients understand the medical facts as well as the related psychological and social issues and help them with making decisions.
Duty to Warn: Is a legal concept that states a group or individual can be held responsible for injury to another person should they fail to warn them of a risk or hazard. For example, pharmacists have a duty to warn their customers about the risks associated with any drugs they buy. If they fail to warn them and the customer is injured, the pharmacist can be found responsible (liable).
Confidentiality: Is an ethical concept that states that certain conversations between an individual and a professional (medical, legal, religious etc) are ‘privileged’ and cannot be disclosed to another person (3rd party).
Useful Information / References The ethics toolkit from the London Ideas Genetics Knowledge Park: www.londonideas.org/internet/professionals/ethics_resources/toolkit/intro.html
Bioethics Analysis Worksheet from Access Excellence: www.accessexcellence.org/LC/TE/BE/worksheet.html
Canadian Breast Cancer Foundation: https://www.cbcf.org
The Private Women Scenario – what do other students think? bioweb.wku.edu/ASP/post5.asp
Who should Genetic information belong to?
A case study from the British Medical Journal: www.bmj.com/cgi/content/full/329/7458/165
Sharing Results: a story from the New York Times query.nytimes.com/gst/fullpage.html?sec=health&res=9802E5DD173AF932A15754C0A9669C8B63
Genetic testing challenges doctor-patient confidentiality: www.msnbc.msn.com/id/6065956/
Writing Assignment: Genetics and Society
The Assignment:
You will write a paper utilizing at least four sources, from the Nova video and/or from the following categories: 1) a mass-market book, 2) an article or editorial from a recent publication, 3) a printed news article that dates from September 2007 or later and 4) a reputable website sponsored by a legitimate organization (No Wikipedia references allowed). Answer the specific topic. Your paper must center on a thesis that goes far beyond mere summary of your sources. You should critically analyze the positions taken/points made by the authors (in the context of your thesis), and explain your own position if applicable. You are welcome to use additional print publications to supplement your discussion. When choosing web resources, evaluate carefully the reliability of the source (Is it cited by other scientists/researchers? Is it published by a specific interest group? Is the group funded by private or public funds?). If you want to use a different combination of types of sources (as opposed to that listed above), I will consider well-justified proposals but you must check with me first. Finally, this writing assignment will be peer-reviewed and thus you should keep your audience in mind at all times in the selection of the topic and in the drafting of the paper. Your audience will be well-educated, interested and critical of your arguments, so be prepared.
Assignment #1 – Submit Topic Proposal & Bibliography (Due April 14/15 in class):
Submit a topic proposal and an annotated bibliography: Write a couple of paragraphs explaining your general topic, your thesis and the directions your arguments will go. Then list your 4 sources, and include a few sentences that explain how that source will contribute to your paper. Your bibliography annotations must be in your own words, of course. This assignment is worth 10 points. Use MLA formating. Note, if the reference is available in print form, the hard copy journal should be cited, not the website that you downloaded the paper from. (For Example, if you use an article from Scientific American, the reference should not contain a website.) Don’t forget to spell-check and use proper grammatical constructions!
Assignment #2 – Submit Paper (Due April 22/23 in class). The actual paper should be in the range of 1200-1800 words (~5 pages). It is possible to fit lots of ideas into a short paper if you craft your writing carefully. You may not recycle or rework a paper that you have written previously and/or for another class. Please refer to a writing manual for guidance on formatting and style. Proper citation of sources is your responsibility. Paraphrasing (taking another person’s sentences and changing a few words here and there) can be considered plagiarism under some circumstances. Follow rules on plagiarism very carefully! Please use double spacing, Times 12 font, 1 inch margins. Do not write name on paper, rather, use your student ID number. Double-sided print-outs are encouraged to save paper.
Assignment #3 – Peer Review (Due May 1/2) I will review papers, organize them into common groupings and assign 4 papers to each study section on April 24/25. Study sections will convene during class time on April 28/29. Each study section will be comprised of ~4 individuals. All individuals in the study section will be responsible for reading all 4 papers, but only one person will be the primary responder for each paper. Each paper will have one primary responder (i.e. the same person will not be responsible for all four papers) As a primary responder in a convened study section, you will be responsible for providing a summary of the paper to the group, citing your perceived strengths and weaknesses of the paper, and stimulating discussion amongst the other 3 reviewers to determine the overall review. Evaluations will be made in three major categories (1:Style/Grammar; 2: Organization 3: Strength of Content) and will be evaluated using a 60 point grading rubric. Based on the discussion in the study group, the primary evaluator will fill in the rubric and generate a 200 word “pink slip” explaining the opinion of the review panel and the awarded score (Use no name, just student ID #). Peer reviews are worth 30 points which will be generated by a combination of study group participation and pink-slip quality. Papers and Peer Reviews will be collected and reviewed by me. Paper scores will be amended by me only in those cases where study sections fail to adequately justify an awarded score. The intent here is for you to appreciate the professional demeanor and respect required in evaluating the work of colleagues.
Assignment #4 (Optional) – Resubmission – (Due May 8/9) The Grammar/Style/Reference Formatting portion of the score on any given paper will not be changed upon resubmission, but if an author wants to rework organization and content as per the reviewer’s suggestions, they may resubmit paper for an overall improved grade. “Pink slips” and both versions of the paper must accompany all resubmissions.
Feric
HRE 4M1
GenEthics
Marshall McLuhan
Catholic Secondary School