GENETIC TESTING WEIGHING BENEFITS AND HARMS THE ETHICAL ISSUES

THINGS TO CONSIDER: Do we know what genetic testing is??? Purpose of testing: bring benefits, also poses harm. REASONABLE people can disagree about whether they would want such knowledge (i.e. BARC testing). Who should have decision making authority; especially with patients under the age of 18?

ELEMENTARY STYLE DECISION MAKING 4.1: You’re with a group of friends; some ar plying computer games while others are about to watch a movie in the next room. One of, your friends, Chantal, likes games but decides to watch the movie instead. Five of you, including Chantal, watch the movie. Once the movie stars, you realize you have seen the movie and the ending is very scary. You know Chantal has been traumatized by scary movies in the past. Should you tell Chantal the scary ending? 4.2: What are the relevant facts? What else do you need to know to make a decision? What questions do you have? 4.3: Should you tell Chantal the ending? Why or why not?

Alzheimer's Activity

What is Alzheimer’s disease? Alzheimer’s disease kills brain cells and causes problems with memory, thought processes, and behavior. Eventually, the disease is fatal. People usually have Alzheimer’s disease for 5 to 20 years before dying of it. What different kinds of Alzheimer’s exist? Different types of Alzheimer’s disease arise at different times in a person’s life. This genetic test gives information regarding the most common type of Alzheimer’s (generally referred to simply as Alzheimer’s disease), which arises after age 65. However, there is also early-onset Alzheimer’s disease, which arises in a person’s 30s, 40s, or 50s. Early-onset Alzheimer’s disease is quite rare.

What causes Alzheimer’s? For any one person, Alzheimer’s disease does not have a single cause. Instead, there are many risk factors; some of these may be inherited, while others may be environmentally influenced. Some studies, for example, show that type 2 diabetes, unhealthy arteries, and severe head injuries could contribute to overall lifetime risk of Alzheimer’s disease. What gene is tested? The gene is for a protein called apolipoprotein E, or APOE (pronounced ap-ohee). You inherit one copy of the gene from each biological parent. The APOE gene comes in three varieties (alleles): E2, E3, and E4. Recent research shows that the E4 version contributes most to Alzheimer’s risk.

If you have E4, how likely are you to get Alzheimer’s? Your chance of getting Alzheimer’s if you have one E4 allele depends on what your other allele is. If you have two E4 alleles, your chance is 15 times greater than someone who inherited E3 from both parents (baseline). If your other allele is E3, your chance is 3 to 5 times greater, and if your other allele is E2, your chance is the same as a person with two E3 alleles (baseline). Is it possible to have E4 but never get Alzheimer’s? Yes. People who have E4 generally have a 13–57% lifetime chance of developing Alzheimer’s. Clearly, this risk is nowhere close to 100%.

Is it possible to not have E4 but still get Alzheimer’s? Yes. There are many other risk factors that influence a person’s lifetime chance of getting Alzheimer’s disease. More than 30% of people with Alzheimer’s disease do not have E4. Can you have surgery or take any medication to prevent yourself from getting Alzheimer’s? No. You currently cannot prevent Alzheimer’s disease.

MAX AND THYROID CANCER Master 4.3 Connecticut Teen With Curable Cancer Must Continue Chemo: Court - NBC News

POWER AND PERIL OF HUMAN EXPERIMENTATION RESEARCH ETHICS

RESEARCH WITH HUMANS Why does it matter? What should the guidelines be?

Do you want to participate? Why or why not? What are the pros and cons of being involved in this research study? Should I just give the medicine to everyone whose hand is raised and see what happens? If I do that, will I be able to tell that taking the medication is more effective than not taking it?

PART 2 What are some elements of a good experiment? How would you design a randomized controlled trial to test the asthma medication? What is a placebo? KEY TERMS: control group, placebo, standard of care, randomized controlled trial, blind study, double-blind study, outcomes, and side effects. What are some possible outcome measures for the asthma study.

RESPECT FOR PERSONS, DURING AN EXPERIMENT Researchers should Avoid placing excessive pressure on people to participate. Ensure that they have informed consent from all study participants. (For example, even if people volunteer to participate, researchers should only accept them into the study if they are informed about it and indicate they understand what is involved.) Respect confidentiality. (For example, researchers should not reveal the identities of the study participants. Sometimes, participants do not want others to know that they have a disease or condition.)

Coercion refers to a threat that makes you worse off no matter which outcome you choose (“your money or your life”). In medical research, an example of coercion might be when a doctor threatens to discontinue care of a patient unless the patient participates in an experimental trial that exposes the patient to serious risk of harm. Undue inducement refers to a situation where participants are swayed to do something with potential for serious harm (such as participate in a risky study with no benefits) by the use of incentives such as excessively large sums of money. Inducements that distort people’s judgment, leading them to agree to do something very risky that they would not otherwise do, are considered undue. Exploitation refers to a situation where people receive unequal benefits for the burdens undertaken; one group of people benefits at the expense of others.

Does the flyer coerce you to do the study? Does the study have your total informed consent? Do we know all the benefits and risks involved in the study????????

STUDY RISKS AND BENEFITS Approximately 10% gained weight 5% had worsening symptoms 90% never had asthma again

DO WE PARTICIPATE IN THE STUDY?? Do you wish to be in the study that you know more about it? Raise your hands. Would you participate in the study even if it would not benefit you – because the formula isn’t perfected- but it might benefit future asthma sufferers?

Homework on Edmodo….. The Ellen Roche Case.