PSYC 3110 Lecture Notes - Lecture 22: Human Genome Project, Health Professional, Research

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Lecture 22: Health Research Participation
Beecher & Bioethics
* Last lecture
- If you are involving human beings in your research you have to ethics oversight (board
has to have oversight what you are doing and approve). Thus, you need to tell them what
you are doing
- Beecher study. Cases are clinical cases. They are research studies that were conducted
in hospitals where there was a therapeutic context.
- If you are a doctor and want to involve patient in research you have to emphasize that
it’s research and not part of treatment and get explicit consent
- Why is the Beecher study so crucial?
- What is the main point of the paper?
Document how prevalent unethical things were
Past there was no ethics emphasis
Calling out research community for ethical failures that occur
- Beecher study discusses:
How melanoma was put into a healthy person
- What does Beecher call out on?
- Beecher talks about prevalence and point out how these things happen in highly
respected in the top biomedical institutions of the country
This is something happening everywhere
He says this needs to change
Health Research Participation
• In biomedical science
Why involve psychology?
• Boundaries between research and clinical practice
- Today talking about being a research participant for biomedical research
- There are psychological perspectives that you can bring into these issues
- When we talk about how people make decisions that is a psychological question
- These are issues that make a difference but approaching them from one discipline gives
you a narrow view (need a broader perspective)
- In research ethics, it is very important from an ethical perspective that you indicate that
you are doing research
- There is a danger that the person you are doing research on that person you are doing
research on thinks it’s part of their treatment (therapeutic misconception)
- When you are doing something to people there is a distinction of is it treatment or
research
- If you want to study how people think about this this is very psychological
Contemporary Trends in Health & Biomedicine
• Ethical, Legal, Social Implications (ELSI)
1. Genetic Research
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- Today we are talking about research and being a participant and the social and legal
implications of that
2. Biobanks & Cohort Studies
3. Electronic Health Records
- Today focus on three areas that are interesting and have gotten a lot of attention over the
last decade
- Attention not necessarily from psychologists but more so high level research funding
environments (bioethicists, scientists)
- If you think about lecture on genetic risk human genome project was discussed. ELSI
research community.
- When we talk about privacy and consent issues these are ELSI research issues.
1. Genetics Research
• Genetics and social science
• Incidental findings
– Obligation to inform versus respect of autonomy
• Risk of privacy infringement
• GWAS
- The foundation of issues discussed in genetic risk lecture
- However, they were discussed from perspective of client
- Class takes genetic test. Finds someone has a genetic risk for a heart disease. Should
professor let that one person know they have genetic risk or not?
- Yes: People want to know if there is anything they can do. Being able to prepare.
Knowing if they can pass it on to children.
- No: Emphasize the chances of the risk impacting their life.
- What we call this is incidental findings
- The reasons when we get differences in opinions there are usually tensions between
ethical imperatives. On one hand, the research can save lives, and if they don’t act they
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may be complicit in someone’s death. On the other hand, researcher has to respect
autonomy of research participant.
- Incidental findings 10 years ago most research ethics boards did not know what this,
now they emphasize and ask if there are chances of findings incidental findings. If there
are have to make a plan. Sometimes ask participants if they want to know.
- Even something as little as there is a chance of you having and someone saying they
agree to that and consent it can be unduly coercive
- How much do you know that gene is going to cause heart attack
- Tests like mammogram have been a round for a long time even though there is
uncertainty we know how much uncertainty there is
- The kinds of issues that might arise when you do research have been emphasized
- Another issue is privacy infringement
- There could be information you don’t want out there
- Issue with research is how you protect research findings
- Reason why we need to think about that is how do we protect that data
- More and more there is a move towards open science however open science in the
context of genetics emphasizes the need to share findings
2. Biobanks & Cohort Studies
• Research platforms
Biobanks
Cohort studies
What is a biobank?
- It is a collection of human tissue samples
- There are many different kinds of biobanks
- Tissue gets collected for different reasons
- A type of biobank would be of keeping tissue samples of why someone died.. another
would be biopsy samples. These things are done for clinical reasons
- Lets say scientist wants to improve the accuracy of mammograms with a study. They
decide that they need to access biopsy tissue banks. Probably a good idea to do research,
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