Topic 6: ethics Flashcards
what does ELSI stand for?
ethics, legal, social issues
what does GE3LS stand for?
genomics, ethics/environment/economic law society
What are the three main types of ethics discussed?
Research ethics, clinical ethics, and public health ethics.
What is Principlism?
An ethical framework consisting of beneficence/non-maleficence, respect for persons, and justice.
What is the role of Data & Samples Access Committees (DAC)?
Ensure researchers have ethical approval, harmonize data for better access, and respect intellectual property.
What is positive law?
A rule made by a government to order societal behavior, involving formalism, enforcement, and sanction.
What is broad consent for biobanking?
A push to go from narrow to broad consent to increase knowledge, despite not knowing everything needed initially.
What is an ethical issue related to personalized medicine and clinical trials?
Limited access to treatment due to high costs, particularly in areas where the disease is most widespread.
What are the ethical issues in the communication of research results?
Open access publishing costs a lot, often requiring grant money; otherwise, data goes behind a paywall.
Why do we need to study genomic issues?
risks to future generations, autonomy of children and parents, distributive justice, discrimination, dignity, self-understanding, and the sacredness of the genome.
What is liberal eugenics?
Aims at improving genetic quality of the human population through positive eugenics (encouraging reproduction of the genetically advantaged) and negative eugenics (eliminating those deemed “undesirable”).
What is genetic exceptionalism?
The idea that genetic information is unique and deserves special considerations due to identifiable information and predictive capabilities.
What is genetic determinism?
The idea that traits can be figured out by looking at genetics alone.
What is genetic overgeneralization?
The idea that everything is determined by genetics, which is not true.
What is geneticization?
The process by which differences between individuals are reduced to their DNA codes, affecting medicine, genetics, society, and culture.
What is the Genetic Discrimination Observatory (GDO)?
An observatory that monitors and studies genetic discrimination.
what is included in reseacrh ethics?
taking these ethical principles and applying them to research – Research ethics board (REB) must accept research projects/protocols
what is included in clinical ethics?
a space where clinicians can come and talk to other clinicals to decide which treatment to use (i.e. two options where both have bad side effects, do you prioritize extending life or increasing quality of life, …)
what is included in public health ethics?
goes beyond the individual and look at the general population (i.e. how do we address the healthcare need of underserved populations)
What does non-maleficence mean in Principlism?
Risk / Benefit, Analysis, Experimental Design, Qualifications of PIs
what does for persons mean in principlism?
Informed consent, Surrogate consent, Assent Protection of subjects (especially vulnerable populations) – consent is an ongoing process which can be revoked at any time
what does justice mean in principlism?
Subject selection (traditionally only white European males were used to test medications), Inclusion/exclusion, Recruitment
