Podcast
Questions and Answers
What term refers to individuals who are anticipating a diagnosis but are not confirmed patients?
What term refers to individuals who are anticipating a diagnosis but are not confirmed patients?
- Participatory patients
- Pre-patients (correct)
- Underserved individuals
- Patients-in-Waiting (correct)
What is 'P4-medicine' primarily focused on?
What is 'P4-medicine' primarily focused on?
- Examining health policy concerns
- Improving genetic discrimination
- Addressing the health gap
- Enhancing participatory approaches to health (correct)
What health issue is described as affecting individuals in lower socio-economic groups disproportionately?
What health issue is described as affecting individuals in lower socio-economic groups disproportionately?
- Lifestyle solidarity
- Health gap (correct)
- Genetic exceptionalism
- Participant empowerment
Which approach emphasizes patient and public involvement in healthcare decisions?
Which approach emphasizes patient and public involvement in healthcare decisions?
What concept addresses the ethical concerns regarding resource allocation in health care?
What concept addresses the ethical concerns regarding resource allocation in health care?
What is a significant concern associated with genetic testing in underserved groups?
What is a significant concern associated with genetic testing in underserved groups?
What key issue has emerged regarding the individualization of health responsibilities?
What key issue has emerged regarding the individualization of health responsibilities?
Which development reflected the shrinking scope of physicians' authority since WWII?
Which development reflected the shrinking scope of physicians' authority since WWII?
What is a primary ethical concern related to genetic testing in personalized medicine?
What is a primary ethical concern related to genetic testing in personalized medicine?
Which of the following best describes the potential effect of data-rich personalized medicine on power distribution?
Which of the following best describes the potential effect of data-rich personalized medicine on power distribution?
What is a significant concern regarding the control of algorithms in personalized medicine?
What is a significant concern regarding the control of algorithms in personalized medicine?
In the context of personalized medicine, what does 'filter bubble effect' refer to?
In the context of personalized medicine, what does 'filter bubble effect' refer to?
What is one implication of data transitioning from public to health domains?
What is one implication of data transitioning from public to health domains?
Which demographic is at risk of social exclusion in the realm of personalized medicine?
Which demographic is at risk of social exclusion in the realm of personalized medicine?
What role do patients play in the vision of personalized medicine?
What role do patients play in the vision of personalized medicine?
What challenge arises from the integration of outside data into the clinical domain?
What challenge arises from the integration of outside data into the clinical domain?
What characterizes the approach of Stratified Medicine?
What characterizes the approach of Stratified Medicine?
Which statement best defines the initial focus of Personalised Medicine?
Which statement best defines the initial focus of Personalised Medicine?
What distinguishes Precision Medicine from Personalised Medicine?
What distinguishes Precision Medicine from Personalised Medicine?
How does the concept of Individualisation in medicine differ from Precision Medicine?
How does the concept of Individualisation in medicine differ from Precision Medicine?
Which is NOT a factor considered in Personalised Medicine?
Which is NOT a factor considered in Personalised Medicine?
What type of data generation method is highlighted in the context of health-related data?
What type of data generation method is highlighted in the context of health-related data?
What is a key critique of Personalised Medicine?
What is a key critique of Personalised Medicine?
Which statement accurately describes the role of 'Cure Together' in health-related data?
Which statement accurately describes the role of 'Cure Together' in health-related data?
What fundamental themes are associated with discussions of genetics and society?
What fundamental themes are associated with discussions of genetics and society?
Which document is NOT typically associated with the codification of medical ethics?
Which document is NOT typically associated with the codification of medical ethics?
In what decade did the concept of ‘geneticisation’ become prominent in societal discussions?
In what decade did the concept of ‘geneticisation’ become prominent in societal discussions?
What does the term ‘biosociality’ refer to in the context of genetics?
What does the term ‘biosociality’ refer to in the context of genetics?
Which area does NOT typically investigate the implications of genetics in society?
Which area does NOT typically investigate the implications of genetics in society?
What was the primary focus of the 3-5% of funding dedicated to ELSI in the Human Genome Project?
What was the primary focus of the 3-5% of funding dedicated to ELSI in the Human Genome Project?
Which of the following best describes ‘enlightened geneticisation’?
Which of the following best describes ‘enlightened geneticisation’?
What aspect primarily shaped the adoption of new scientific fields according to social sciences in the context of genetics?
What aspect primarily shaped the adoption of new scientific fields according to social sciences in the context of genetics?
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Study Notes
Genetics and Society
- Medical ethics emerged primarily through philosophers and physicians; foundational documents include the Nuremberg Code (1949) and Declaration of Helsinki (1964).
- The Human Genome Project allocated 3-5% of its funding to explore Ethical, Legal, and Social Implications (ELSI).
- Social sciences play a crucial role in assessing societal adoption of new scientific fields, initially approached with skepticism towards normative views.
Identity
- Concept of ‘geneticisation’ emerged in the 1990s, evolving into ‘enlightened geneticisation’ and ‘biosociality’ in subsequent years.
- Empirical studies indicate that individuals often incorporate genetic information into their existing identities without significant behavioral changes regarding health.
- Mixed perspectives in the 2010s:
- Negative aspects highlight the concept of 'Patients-in-Waiting’ and the implications of being a ‘pre-patient.’
- Positive aspects emphasize P4-medicine: participatory, personalized, preventive, and predictive approaches towards healthcare.
Justice
- Deborah Stone’s “chocolate cake” metaphor illustrates equitable resource distribution as a primary bioethical concern.
- Health disparities exist, with socioeconomically disadvantaged groups facing higher health risks, known as the ‘health gap.’
- Concerns about genetic discrimination and individual responsibility, especially in costly predictive testing, have prompted discussions on lifestyle solidarity and the diminishing notion of genetic exceptionalism.
Participation
- Shifts in physician authority and expertise have increased since WWII, promoting patient participation in healthcare decisions.
- The 2010s saw enhanced opportunities for individuals to generate and analyze health-related data outside clinical settings, facilitated by online genetic testing and community platforms like "Cure Together."
Personalised Medicine & Precision Medicine (PM)
- Personalised Medicine originally aimed at aligning drug treatments with specific genetic markers but later incorporated broader data including non-genetic factors.
- Alternative Concepts:
- Stratified Medicine focuses on pathophysiology related to treatment.
- Precision Medicine, recognized since 2009, connects data-rich medicine with clinical practice.
- Individualisation highlights tailoring healthcare to individual characteristics.
Ethical and Social Challenges
- Autonomy relates to individuals' rights to know or not know about their genetic information.
- Ethical concerns extend to family member rights, data protection, discrimination avoidance, and identity impacts.
- Emphasis on molecular and digital data raises questions about the inclusion of other evidence types meaningful to patients.
Conclusion: Regulatory Challenges
- Data-rich PM emphasizes collaboration, shifting power dynamics, and expertise distribution.
- Movement of data between public and health domains has transformed data analysis into a market-driven endeavor.
- Patient contributions of data pose significant ethical questions, including who maintains control over personal health repositories and algorithms.
- Risks of social exclusion and 'filter bubble' effects further complicate the landscape of personalised medicine.
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