Ethical issues in research

Ethical Issues in Research Ethical Issues in Research. The learning outcomes include: explain the ethical standards that
researchers should follow when conducting research projects that
involve humans, including surveys and recommend strategies to ensure ethical decision-making when completing research projects. Let’s start with the basic definition of
ethics and throughout this lesson we refer to business dictionaries’ definitions frequently. And we’ll do that to start with ethics. “The basic concepts and fundamental principles of decent human conduct.” Of course you have to define decent which is difficult to do. “It includes study of universal values such as the
essential equality of all men and women, human or natural rights, obedience to the
law of the land concern for health and safety and increasingly, also for the natural environment.” Sometimes however the law will conflict
with what we believe to be ethical values and we have to decide how we
handle difficult situations like that. So to summarize, it’s a set of beliefs about right and wrong behavior, but it’s difficult to define what is right and wrong. We all have different
backgrounds, different cultures, different families that we grew up with, and our
beliefs about right and wrong may not be universal; in fact, they won’t be
be universal so determining what is right and wrong may vary from person to
person and may be hard to do all the time. Ethical behavior is in line with
generally accepted social norms, though social norms are also going to be
affected by underlying cultural, religious, moral beliefs of that group. Again it’s
very difficult sometimes to determine what is the generally accepted social norm and it will vary from place to place and from time to time. Doing what is difficult – doing what is ethical can be very difficult as
is at the code can be very difficult as all of us probably know in certain
situations. Some professional groups – most notably ACM — for the IT idea profession, but you see a
couple of others here as well — setup codes of ethics, and almost every
professional group has one or more organizations that have codes of ethics
for the people who are in that profession. They are the principles and
core values of the IT profession, although they typically apply across professions
as well. ACM’s view is that professional should
contribute to society and mankind, avoid harm to others, be honest and trustworthy, be fair and
don’t discriminate, honor intellectual property rights and give credit where
credit is due, respect the privacy of others — don’t invade it or try to learn
more about a person when they have a right to privacy — and honor
confidentiality and anonymity when you are gathering, storing, securing customer data and that information, if it gets out, could be damaging to someone. So if you
say you’re going to keep it confidential, do it. You say you’re going to keep it anonymous, then do so, Moving on to research ethics: so we
started talking first about personal ethics, which spills over to professional
ethics. Research ethics is also another component of ethical dilemmas that we have to handle. Some guidelines include: conduct research in good faith. Have a
valid reason for doing your research. Do it in an ethical, professional manner. You also want to conduct research that meets scientific standards — follow
appropriate statistical techniques, make sure the method used is appropriate for
the data collection that you have. Follow guidelines for your profession and for
the scientific community. Pay attention to what the results say. They may not say what you anticipated. Be open to that and speculate on why it happened if your
results did come out contrary to what you thought. Pursue organizational best
interests. Sometimes organizational interests may get in the way of personal ethics or morals may get in the
way of what’s best for society. Perhaps a pharmaceutical company elects not to
make a drug that could help cure a disease, or they want to charge a higher
amount. Sometimes organizational best interests are not in line with society, moral
and ethical underlying personal ethics, and you have to decide
what you’re going to do. Treat subjects well. If you say you will debrief or
inform them afterward, do so. Do not subject them to any undue stress that’s
not part of the experiment you’re conducting. if you do subject them to stress you
need to debrief at the end and explain what happened. Finally, reduce coercive or reward responses. So you don’t want to try to make people participate. Say they take an
online class and you say, prior to getting your grade for this class, you must take
this survey. That’s coercive or reward. You’re giving them their grade once they
do it. I don’t use extra credit points to give students a reward because I want
them to participate at their choice. If I give extra credit opportunities to a group for doing a survey, to remain ethical, I must offer a similar exercise for those who choose not to take the survey. So I must
offer them an exercise that takes about the same amount of time and effort and
then allow them to earn the extra credit. So I simply don’t do that.
Sometimes you may have that where people will be entered into a drawing for a
$100 Amazon gift card or something like that. While that is mildly coercive, it’s not a huge
incentive to participate but sometimes people will do that. Underlying it all you should do no harm
and type to do good much like the Hippocratic Oath for doctors. Do no harm and do good for your organization, society your profession, and so forth. And again, we’re referring to the
Business Dictionary although most of these concepts are terms we’ve heard of
before. Honesty – being good and truthful, not hiding the truth, not deceiving, having a good and truthful character so you don’t want to
lie to people. If it’s part of an experiment you might, and then you debrief them at the end. But you want to tell people the truth. You also
have to protect confidentiality and sometimes that means you may not share
the truth because you’ve agreed not to. Back to drugs – sometimes you do have
to withhold information to follow the guidelines of your contract and your
profession. Integrity is strict adherence to a moral
code. You’re transparently honest in everything you think, say, and do. You have
integrity, for instance academic integrity, is following the guidelines of
the University and the class, not sharing material, giving credit where credit is
due, not cheating in anyway. So you have
integrity as a researcher when you are transparent in everything you think
and do as much as you can be within the confines of a contract or other legal issues. The third term we’re going to look at is objectivity, and
this is where you eliminate your biases, prejudices, or subjective evaluations by
looking at the data rather than relying on your thoughts, your feelings, your
beliefs. You allow the data to drive your interpretations. In reality, we all
have biases and prejudices. We grow up and we form our own biases
or prejudices against a company, against a person, against a group – whatever it
might be. We form those biases against them. What we need to do as good
researchers is to realize we have biases and prejudices and minimize them as much as possible. Now you see in the bottom corner of this slide – a logo for National
Science Foundation and National Institutes for Health. If you’re doing
research funded by one of these groups you need to make sure you state that
when your research is published, in case people believe that NIH has a bias and
gave you money to do a project that will lead to results that they want to see. I’m just giving a hypothetical instance
here but you need to report anybody that gives you funding. Oftentimes reports on the effectiveness of medications are funded
by the pharmaceutical companies. If so, you need to report on that. That doesn’t mean your results are incorrect or biased. But it means that people need to know
that you had this agreement with them, that they paid you to do the research. Pharmaceutical companies may also decide not to publish research that shows their
drugs are ineffective. So they simply put it on a shelf and don’t pursue that drug.
But they may not want the public to know that I spent research and development on
drugs that don’t work or that has adverse effects. Though that may
interfere with your underlying professional integrity and ethics and
your personal integrity and ethics, but you have to do the best you can within
the confines of a contract. Honesty, integrity, and objectivity are three
characteristics that every researcher should strive to achieve. Let’s look at confidentiality and
anonymity when you’re conducting research or when you’re holding onto a
large amount of people’s data, like most companies do now. These two terms are
different. Confidentiality means, I know who you are
or maybe I know enough to determine who you are and I promise not to tell anyone.
That is a different quality than anonymity. They are related
terms, but they mean different things. With anonymity I don’t know who you were
so there’s no problem with confidentiality. I can’t tell because I
don’t know who you are. I don’t have a way to individually identify you. You
can promise confidentiality or you can promise anonymity, but it’s difficult to promise both. If it’s anonymous, it’s already confidential, but if it was confidential,
then you have a way of identifying the person. Typically researchers will say
will adhere to the confidentiality and anonymity of the
data as much as possible, unless subpoenaed for the information. If you’re
subpoenaed, oftentimes researchers will release it, just like anyone would release it. But they they’re different terms. Confidentiality – you won’t tell. Anonymity – you simply don’t know, so you can’t tell. You can take at look at this YouTube video on privacy laws and confidential confidential information. It
includes information on HIPAA, which is the health insurance privacy guidelines,
Health Insurance Portability Act, but you can take a look at that and learn a
little more. Let’s look a little closer look at confidential. You do need to describe the limits of confidentiality that you or your
research study will adhere to. Disclosure as mandated by law, as I
mentioned on the previous slide. So confidentiality – I’m not going to tell
but going further you need to describe any limits to that. You also should
describe how you will use the data, what is that going to be used for. A research
study looking at how data is secured in a large organizations. I typically would say then, no individually identifiable data will be released, only released in
aggregate form. You should keep your records in a secure place. In previous
years, that meant putting it in your locked office which of course could be
broken into, but they have to have a key or get in when your door’s unlocked
or whatever. That means usually on your laptop on your tablet or on the cloud
and you have to determine is that truly a secure place. You need to be as secure
as possible. You cannot be 100% secure because there
is no such thing. As I mentioned, you typically don’t release individually
identifiable information unless you’re interviewing big name people and they
agreed to allow you to do that. You don’t want to use social security numbers at
any time any more. Universities used to use social security numbers. They no
longer do. So did banks, schools, all sorts of people that now allow you to not use
your social security number. So I don’t ever collect that information. Finally, you need to allow the people who respond to your survey to decide at a later date
that they don’t want to participate. They’re taking the survey, and they get
two questions that make them uncomfortable and they exit. You need to
allow them to do that. You also need to allow them if they opt out three weeks
later because they change their mind — if you can, if you’re able to pull them out,
you should pull them out. Typically if it’s anonymous, I don’t know who they are,
and it may be difficult for me to remove them from my study. If it’s simply
confidential and I do know who they are, then I am able to remove
them. But you need to allow respondents to change their mind at a later date if feasible. Further you need to make sure that your
respondent gives informed consent prior to participating. In your research
project you need to use reasonably understandable language at a reading
level appropriate for the people who are taking your survey. You may not survey
those under 18 without parental permission. Even when I’ve done that
before in the past, surveyed high school students and received written permit parental permission, I have still as the beginning of the survey, do you agree to
participate? Because it’s teenagers — the group we were studying — I felt they had
the ability to decide for themselves if they wanted to participate. After their
parents had agreed to it, then I allowed them to also consent. But they cannot
consent on their own and I did not have to ask them about informed consent once their parents had agreed. So parents could agree to put their
children into a research study or a clinical trial because they have a
severe illness. And the children do not have to agree because they cannot enter
into a contract until they’re 18. You want to clarify the responsibilities
that the researchers involved have. Here’s where you describe the limits of
confidentiality and/or anonymity within your study — what you’re going to do with
the data, how they opt out, etc. You can take a look at this YouTube
video on the history of informed consent. Informed consent and research ethics
really emerged after the Tuskegee airmen syphilis experiment, where some patients with syphilis were not treated to look at the progression of syphilis
over time. And they were not told they weren’t being treated, while others were
treated. And they compared the control that weren’t treated to those that were.
That’s obviously ethically and morally wrong, and research ethics and informed
consent emerged after that. And of course, after the Nazis experimented – did medical
experiments on prisoners – without consent. Prisoners can never really give informed because it can be seen as coercive or reward if they participate. So they’re
in a position of less power or reward if they participate. It’s difficult to find a way to let them give informed consent. And informed consent emerged after they and other
similar events that occurred in the past. Some defects in research that’s reported:
reporting statistics incorrectly either by error or deciding not to report
some statistics that may not agree with your findings. Not reporting failures and
particularly this applies to things like the pharmaceutical industry where we
could learn from the failures but if the pharmaceutical company pays for us to
do the study, it does not show that the drug failed. They don’t want their competitors
to know, so they don’t give up those research and development dollars they’ve already spent. They want their competitors to have to spend that too. From a societal perspective, we would prefer that all results were reported but from a competitive economy that we have, you
would want them to be able to do — if they own the data, they should be able
to do what they want to do with it. Sometimes you have to decide if societal needs override the personal or professional or organizational needs. The last defect is not having information security at an adequate level for the data that you collect and maintain. And of course you’ve seen this with companies gathering data
on their customers, which customers freely gave them, and then the data was
not protected, and credit card information released. Embarrassing
information released, like the Ashley Madison website scandal. Ashley Madison
is a website that encourages married people to have an affair with
another married person. They guaranteed confidentiality. They guaranteed that if their customers ask to be forgotten they would be forgotten. They were hacked, and the hackers said, you either pay us X amount of dollars or we’re going to release the names. Ashley
Madison refused the ransom demand and the names were released, resulting in great personal and professional damage
to several people on the list. So you need to provide adequate information
security. There’s no way you can have 100% protection; it doesn’t exist. You can take a look here about linking and protecting government data — at this YouTube video. One other issue that should be considered when you’re looking at research ethics is who receives credit
as an author. Anyone whose name is on the study must make a primary contribution.
It is unethical to include someone on a study if they did not make a contribution. So you can’t always include another person on your study, and they do
the same for you on their study. So you both get credit for being authors on multiple studies. You must make a primary contribution in order to receive your
name on the report. Now if you have a research project as a group, in your
classes, in your graduate work — often times you put the names in alphabetical
order which is the easiest thing to do in a group because then you don’t get into a fight and so forth. But I have had students leave off a member of a group who didn’t participate. And you usually have the opportunity to evaluate your peers. But
the author on a published report should make a primary contribution. So they might gather data. They might interpret the data. They might
write the literature review. They have to make a meaningful impact. As soon as possible, you do want to establish the order of authorship. As I said, for most research papers in your graduate programs of study, alphabetical is the easiest way to go if
everyone participates. But if you do have studies that are published, you need to say
who’s the first author, who’s the second the third, and what are the responsibilities that each of these authors. You can take a look at this short
kind of funny YouTube video if you like. Responsible conduct of an ethical
researcher: we’ve been talking about that throughout this presentation. Other
things to consider that are very ethically burdensome: what if another
stated fabricates data and you know it? Should you report them? Many graduate students say yes absolutely! Then I say, what if it was your friend
sitting next to you or your best friend. Would you report them? Then I say, what if
it was your spouse or significant other sitting next to you or your mother or
your father or your sister or your brother? It gets a little more difficult
to answer those questions. From an ethical perspective, the answer should be
the same regardless — as a member of the academic community, you should report any one who fabricates data, who cheats, who takes work that’s not their own, no
matter the relationship. Morally, we may then find that we have
a higher burden to our mother or father. For instance that family burden or a
friendship burden — a moral responsibility that’s higher to not hurt our friends,
our family. But you should ethically report it. You should also report it if your professor plagiarizes or cheats or fabricates data, you should report it. Students will say, I would report it maybe after this semester because you’ve got an imbalance of power. But again, you
should report it no matter what, but it’s difficult to do when you start having
particular situations arise morally. And your personal protection, your
personal safeguard, ethics or beliefs start to come into play, and it’s really
much harder than a student who you don’t know who’s copying a paper next to you. The situations that emerge are usually harder than that, and you can take a look at this Facebook short video if you like/ To summarize, researchers have a burden
and a responsibility to follow ethical guidelines when they conduct and report
research. They should be honest. They should have integrity. They should follow
ethical guidelines of the profession, the organization, and personal ethics.
They should be sure to distinguish between confidential and anonymous data
and explain that to the respondent. They must ensure that the respondents give
informed consent, and they must determine authorship as early as possible, and only
include authors who make a primary contribution to the report. When, as an ethical research, you’re trying to be responsible and have honesty and
integrity in your research, it’s difficult sometimes. You may have to
follow laws that you don’t believe to be true, but if you’re a government employee and it’s this part of your job, you may have to follow those laws. Perhaps
you protest them as much as you can. You go out and try to change the laws but you do have to consider everything going on. Consider
your responsibilities to yourself, your family, your organization, your profession
and society when making very difficult ethical decisions.

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