Ethics

Scenarios for Guest Lectures

Below are four ethical scenarios, each with the ethical issues involved outlined,
that I want the class to explore. Although you will be allocated one to look at, you
should make sure you are familiar with all four, as I want you to stick to your
scenario and not cover material that is being covered by other scenarios
(inevitably there is some overlap between them). You will not get marks for
covering material that is outside of your scenario, no matter how well you cover it.
Your goal is to research this area thoroughly, and to present to class a guest 30
minute lecture on the subject. This lecture should educate your classmates (and
yourself) about these ethical issues so that they can be properly considered for the
Opinion Editorial, and so that appropriate evidence-based opinions can be
presented in the Editorial. You may use powerpoint (or other) slides, handouts,
visual media, and/or whatever other supporting material you feel appropriate. The
style in which you deliver the lecture is entirely up to you, but it must achieve a
clear understanding of the issues by your audience. You will also need to prepare
handouts for the class to help them learn!!
For each scenario, I present some example cases. You do not have to present or
respond specifically to these cases in your lecture: they are merely examples to get
you thinking about the nature of the issues I want you to explore. You can use these
cases if you want, but only by way of example: I want you to investigate the general
issues involved: do not restrict yourself to just answering these narrow examples.
More extreme and less extreme examples likely exist for all these scenarios, so do
not limit yourself by what is presented.
You should use a range of sources that have looked at these issues so you can build
a picture of the current state of thinking regarding them. Many are moral
questions, and there is no right and wrong answer. So, the goal is not to find
answers to these cases, but instead to explain to the class the nature of the ethical
questions that your scenario raises, opinions on these questions, and where the
current state of knowledge lies with these issues. Where appropriate, I want you to
describe where science can help with the issue, and what the current state of
scientific knowledge is. Many of these issues have been explored in a range of
different fora, such as in newspapers, the popular press, court cases, and the
scientific literature. Draw on a wide range of sources and get different opinions,
then integrate this information together into a coherent picture. Note that the
scientific literature constitutes a verified source, whilst the others usually do not.
Given that these are actual lectures, and that everyone will need to know the
content, it would be good to provide some references for your classmates.
You will do these lectures in pairs. You should present the lecture together (up to
exactly how you do it). Everyone will anonymously provide me with an estimate of
what proportional of time (between the two of you) that they contributed to
preparing the lecture. Therefore, if both people contributed equally, the
contribution would be 50%. In addition, you will (anonymously) grade the other
pairs lectures on a 5-point scale. Together, these will help to decide the final total
grade for this assignment.

The five point scale is as follows:

5 Excellent: comprehensive, and I understood everything
4

Good: it was mostly clear and comprehensive, however there were a few
things I didnt understand and/or werent covered sufficiently

OK: could get some of it, but not really clear and/or didnt really cover
everything I needed to properly understand the topic

Poor: Mostly didnt follow it, and/or was off-track and focused on stuff that
isnt relevant

Terrible: Wasted my time.

The assignments are allocated as follows:

Joanna/Alka Scenario 1 (Do you want to know)

Georgia/Tigist - Scenario 2 (Who does this knowledge effect and how)

Freeman/Thomas Scenario 3 (Who has rights to these data and the
information they give)

Siaosi/Johnny Scenario 4 (Will it help with my disease)

The lectures will be done during lab time on

Friday, September 18th. This is final obviously
there will be no extensions.

Do you want to know?

In this lecture I want you to explore the issues that surround moral dilemmas that
may arise through finding out things from personal genetic data. While personal
genetic data may seem a bit like harmless fun, sometimes serious issues arise, and
sometimes people respond strongly to this new information. Would it have been
better to not know? For example, imagine these cases:

1) You decide to do a 23andme analysis because you are interested in genetics
and your own genetic makeup, but when you get your results back, your
ancestry analysis shows that about half your genome has Asian ancestry.
Something is wrong: Obviously youre not half-Asian. For example, both
your parents are white and you are not adopted. So you contact the
company, and they think that maybe your sample got mixed up, so they
offer to do it again for free. You do it, but when the results come back, it's
the same you ARE half Asian. Fast forward through painful family
discussions, and it turns out that when she was younger, your mother
wasnt as well-behaved as she could have been, and your biological father is
some Japanese dude. Your life has changed (Note, this is actually a true
story, apparently).
2) You are a 22 year old female and decide to do a genome analysis on a whim
because some of your friends are doing it. However, when you get your
results back you find, to your horror, that you have a BRCA1 mutation (like
that which Angelina Jolie has) that gives you a much increased risk of breast
and ovarian cancer. What do you do now?
3) You do a 23andme analysis and find that you have an increased risk for
diseases like heart disease and diabetes. What is your response? Do you
radically change your diet and lifestyle to counteract the effects of your
genes? Or do you no longer care about diet and lifestyle, because your fate is
being dictated by your genes?
4) You do a 23andme analysis and find that you have a decreased risk for
diseases like heart disease and diabetes. What is your response? Do you no
longer care about diet and lifestyle, because you are going to be protected
by your genes?

Who does this knowledge effect and how?

In this lecture I want you to explore the issues that surround the potentially
cascading effects on others of finding out information on your own personal
genetic data. Your personal genetic data have a good chance of being shared by
close relatives, so what are your data overlap with what are relatives data, and
what affects you may be relevant for them, too. Furthermore, with gene therapy
being on the verge of being possible, we have the opportunity to fix bad
mutations. But, if these fixes are passed on, then its not just you who is affected
future generations will also have the change. In this case, who decides what is
meant by bad? For example, imagine these cases:

1) You are a 22 year old male and decide to do a 23andme analysis because
you are interested in genetics and your own genetic makeup. But when you
get your results back, you find that you have a BRCA1 mutation (like that
which Angelina Jolie has). This is not thought to significantly raise cancer
rates in males, but if you are a carrier, chances are some of your female
relatives are, too. Do you tell them? If so, how do you tell them? What
happens if it turns out they didnt want to know?
2) You are really interested in genetics research, and therefore when you have
a personal genetic analysis done, you allow researchers to freely use the
data for research. However, because the data are freely accessible to
anyone, someone downloads the data, and uses it to discriminate against a
close relative. What right did you have to make these data freely accessible,
when the information is not solely about you?
3) You are congenitally deaf due to a single mutation. The latest genetic
research finds a way to correct this mutation, such that all your children will
not have the deafness mutation. You undergo the procedure, but you then
find that your extended deaf family shuns you, believing that your deafness
actually offers advantages that outweigh the disadvantages. Your children
grow up without any contact with their extended family.

Who has rights to these data and the information they give?
In this lecture I want you to explore the issues that surround the use of personal
genetic data by those outside of yourself (and your immediate family), particularly
by organizations. Currently ethics committees tell us not to reveal any genetic data
that could have health implications to students, in case this jeopardizes their
chances of getting insurance later on. In addition to insurance companies, the data
could also be used by employers and the Government. Access to these personal
genetic data may allow these organizations to make better decisions: should they
therefore be able to access them? For example, imagine these cases:

1) You decide to do a 23andme analysis, and when you get your results back,
you find that you have a mutation that gives you a very high chance of
getting a certain health condition. The good news is that this condition is
very treatable; the bad news is that treatment costs a LOT of money.
Therefore, you decide to take out health insurance, but of course without
informing the insurance company of your results. Is this a form of fraud that
takes advantage of health insurance companies? Or by disclosing this
information would you effectively be barred from being able to get health
insurance that you should reasonably be entitled to access?
2) You are on the search committee for a key position in your company that is
being advertised. One day you happen to stumble upon some personal
genetic data from a person who is the top candidate for the job. The data
shows that the person is at high risk of developing a fatal genetic disease
that significantly shortens their lifespan. You want a person who is going to
develop into the role and be around for the long-term, therefore you decide
not to employ this top candidate on the basis of this genetic information.
Who does this decision advantage and disadvantage? Who would the
opposite decision have advantaged and disadvantaged?
3) You work for a Government health agency, and eventually persuade public
opinion and the Government that it is beneficial for New Zealand to collect
genome sequence data for every newborn child. A couple of years later, a
major pharmaceutical company offers to pay the Government a large
amount of money to access the data to help in their drug design search.
Should you recommend the Government to take up this offer?
4) The Government from 3) decides to let the police access these genetic data
to identify criminals from DNA left behind at crime scenes. This results in a
number of people being convicted of crimes they otherwise would have got
away with, but also in some cases where innocent people are convicted
because their DNA was deliberately planted at a crime scene. Is the decision
to allow police access to these data a good one for society, on balance?

Will it help with my disease?

In this lecture I want you to explore the issues that surround the use of personal
genetic data for helping with disease. These issues are usually related to inequity of
access. For example, imagine these cases:

1) You have been diagnosed with a type of cancer, and your doctor
recommends a full genome test and bioinformatics analysis to identify
possible mutations that could be targeted to treat the cancer, as there is no
standard therapy for this kind of cancer. The last patient who had this
cancer took this approach, and was cured. Problem is that this genome
analysis costs $10,000, and you dont have any hope of being able to find
$10,000
2) Following a cancer diagnosis, you undergo a full genome test and
bioinformatics analysis. This identifies a mutation in the cancer that, luckily,
a drug has been found that very effectively kills cells carrying this mutation.
However, the problem is that treatment costs $20,000/month, and you have
no health insurance and no way to cover these costs... (In an alternative
scenario, the drug is available overseas but has not been approved for use in
New Zealand, or has been approved but not for cancer treatment.)
3) Following a cancer diagnosis, you undergo a full genome test and
bioinformatics analysis. This identifies a mutation in your cancer that some
researchers are working on developing a cure for right now. Your doctor
offers you the chance to be a part of a clinical trial for this experimental
drug. However, in that trial you only have a 50% chance of being given the
drug (50% are placebo controls), and if you get the drug, there is a risk of
side-effects including death. What do you do?