Written Communication
The NIH and other organizations recommend that all patient education materials are written at a _____ reading level?
a)1st-4th grade
b)5th-8th grade
c)9th-12th grade
d)College-ready
b) 5th-8th grade
How are eugenics and AI connected?
•Because AI is primarily trying to find patterns and clusters in data, AI is built on statistical tests
•Many previous and current leaders in AI hold eugenic beliefs
•Multiple generative AI LLM’s have very quickly adopted eugenic ideas after being trained on public information
What is the definition of Eugenics?
A social and political movement that sought to shape reproduction in order to produce a population judged to be biologically “better.”
What does ELSI stand for?
E: Ethical
L: Legal
S: Social
I: Issues
What are the 3 errors often made about genetics?
Genetic Essentialism, Genetic Determinism, and Genetic Reductionism
Why is genetic literacy important?
1. Individuals with lower genetic literacy are less likely to recall information discussed with them by a health care provider
2. Patients are likely to ask their regular physicians about genetic questions prior to or instead of seeking a genetic professional
Why should you consider AI in public health genetics?
Genomic data is complex, our understanding is still advancing, the magnitude of genomic data continues to increase, more representative data is being collected (increasing generalizability of AI models), and both monogenic and polygenic risks impact human health
What was the goal of eugenics programs?
“To improve the natural, physical, mental, and temperamental qualities of the human family.” (Eugenics Record Office, 1927)
What is the Public Health Code of Ethics?
•Professional standards and expectations developed for PH practitioners and institutions (Original version published in 2002, current is from 2019)
•Indicates that in order to address complex ethical questions, PH practitioners need to have a set of skills that allow them to:Identify the ethical dimensions of PH work, Articulate conflicting values and ethical dilemmas when they arise, Deliberate on options and courses of action by engaging individuals and groups affected, Implement and evaluate solutions
What can the 3 fallacies lead to?
Genetic exceptionalism and eugenics
T/F: Personal health literacy is the degree to which individuals have the ability to find, understand, and use information and services to inform health-related decisions and actions for themselves and others?
True
What are examples of ethical considerations when it comes to AI use in public health genetics?
•Privacy of data
•Accuracy (What is the accuracy of the data going into and coming out of the AI model?)
•Bias
•Transparency, Explainability, and Interpretability of results
•Consent
•Tension between maximizing population well-being and limiting autonomy
•Equitable access to care
What was the case of Buck v. Bell (1927)?
- Carrie Buck was born in 1906 who got pregnant at age 17. She was committed to the Virginia State Colony on the grounds of feeblemindedness and promiscuity. She was sexually assaulted by a relative of her foster family. Her mother was committed to the Virginia State Colony for Epileptics and the Feebleminded.
-The Supreme Court case established that the state had the right to force a person to be sterilized without consent.
- The decision has still not been overturned
What are the four major bioethical principles?
Respect for autonomy (individual persons, relational autonomy of community members), beneficence, non-maleficence, and justice.
What is genetic essentialism?
•The belief that things have essences — one or more deep, underlying characteristics, without which the thing or person would not be what it is — and that these essences explain why certain individual things or people are appropriately considered members of the same category
Which of the following ARE definitions of genetic literacy?
a)Genetic literacy builds on the foundation of health literacy. It is the ability to understand and act on health information related to genetics
b)Sufficient knowledge and appreciation of genetics principles to allow informed decision-making for personal well-being and effective participation in social decisions on genetic issues.
c)As a subset of health literacy, genetic literacy could be defined as the ability of an individual to understand concepts important to the use of personal genetic information d) all of the above
d) all of the above
What are examples of AI use in public health/public health genetics?
•Simulating Disease Outbreaks
•Chatbots (Utilized by local health departments during COVID-19, Implemented as part of the Geisinger MyCode program)
•Education – creating course content, assessments, rubrics, simulations, and interactive modules
•Predictive models to estimate the impact of policies
•Primary Care Diagnostic Support Systems – complex case triage and differential diagnosis
•Triage the provision of care or allocation of resources
•Insurance authorizations
•Genomic sequencing re-analysis
•Deciphering chromosomal rearrangements
What are the areas of contention between eugenics and public health?
• Eugenicists often opposed public health programs including vaccination and assistance for the poor. Charles Davenport began his career in the field by questioning the role of public health.
• Role of heredity in infectious diseases: Public health field believed infectious diseases were caused by germs and environmental conditions. Eugenicists believed heredity played a large role in infectious disease.
What are laws that pertain to informed consent?
Common Rule: Codifies ethical principles outlined in the Belmont Report for human subjects research; outlines exemptions to the requirement; outlines requirements for informed consent; updated in 2018
HIPAA: Researchers working within covered entities must obtain participant authorization to use or disclose any identifiable health information; state and Local Laws
What is genetic determinism?
•The belief that if one knows the genotype, then one can foretell the phenotype with a very high degree of certainty, regardless of social or environmental context.
What are ways to improve the usability of health information?
1. Limit the number of messages to generally no more than 4 main messages
2. Clearly state the actions you want the person to take, and why it is important to them
3. Focus on behavior rather than underlying medical principles
4. Avoid long or run-on sentences (better to use bullet points!)
5. Avoid jargon
6. Supplement the information with pictures (and be sure to place them in context)
What are some challenges of AI use in public health genetics?
•Ethical frameworks must be put in place to guide the adoption and use of AI
•AI is only as good as the data used to train it
•Accessibility of genomic data in large databases is often siloed
•Public health professionals should have integrated partnerships with AI
•AI “black box” can impact trust in public health
•Individual privacy concerns and data misuse
•Parallel policy development
• Learn and interrogate this history so that we do not repeat it in the future.
• Dedicate time, thought, and funding to the ethical, legal and social implications of genetic/genomic discoveries, technologies, and initiatives.
• Make a focus on equity a priority in the work that we do.
• Engage communities in dialogue and collaboration.
• Educate to increase genetic literacy across the population, including talking about uncertainty and what we don’t know.
What are the important documents that we covered in class?
Nuremberg Code, Declaration of Helsinki, Belmont Report, Declaration of Taipei, and the Public Health Code of Ethics
What is genetic reductionism?
•The belief that higher-level phenomena can, in theory, be entirely explained by knowledge about lower-level parts and processes, and that, accordingly, phenomena are more fruitfully investigated at those lower levels.