Questions and Answers
Which ethical concepts were primarily discussed by philosophers and physicians in the context of genetic testing?
What was the focus percentage of the Ethical, Legal, and Social Implications (ELSI) in the funding of the Human Genome Project?
What term was used in the 1990s to describe the phenomenon where society begins to frame personal identities around genetic information?
Which of the following is NOT one of the main themes identified in discussions about genetics and society?
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What does the term 'Biosociality' refer to as discussed by Paul Rabinow in 1996?
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Which societal aspect was initially approached with great reservations by social sciences regarding new scientific fields?
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The transition from genetics/genomics to personalized medicine primarily addresses which of the following challenges?
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What was the trend of genetic information integration observed in empirical studies from the past decades?
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What aspect of online testing for complex diseases has been noted regarding its influence on behavior?
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Which term describes individuals waiting for a diagnosis related to complex diseases?
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What does the 'chocolate cake' problem of justice highlight?
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Which factor contributes to higher health risks in lower socio-economic groups?
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What has been emphasized since the mid 20th century in the doctor-patient relationship?
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What is a concern regarding predictive tests mentioned in the content?
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What does the term 'lifestyle solidarity' relate to in health contexts?
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Which historical figure is associated with the idea of physicians being alone with their patients?
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What is the primary difference between Personalised Medicine and Stratified Medicine?
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Which of the following data sources has significantly expanded the possibilities for health-related data generation in the 2010s?
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How is Precision Medicine defined in the context of modern healthcare?
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What aspect does the concept of Individualisation relate to within the broader scope of Personalised Medicine?
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In which year did the FDA begin formally associating Precision Medicine with data-rich approaches?
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What is a key critique associated with Personalised Medicine?
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Which term is not directly associated with the alternative concepts of Personalised Medicine discussed?
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What role do patients play in the context of health-related data generation and analysis?
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What is a potential consequence of the shift towards data-rich personalized medicine?
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Which of the following is not considered a main ethical or social challenge of personalized medicine?
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How might the increasing availability of digital health data create ethical concerns?
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In the context of personalized medicine, who could be considered a 'gatekeeper' of personal health repositories?
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What challenge does the 'filter bubble effect' present in personalized medicine?
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Which statement best reflects a concern regarding data moving from public to health domains?
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What is a possible effect of including digital and molecular data over other types of evidence in personalized medicine?
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Which challenge is associated with the roles of algorithms in personalized medicine?
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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.
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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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Description
This quiz explores the intersection of genetics and medical ethics, highlighting key historical documents such as the Nuremberg Code and the Declaration of Helsinki. It also examines the role of social sciences in understanding societal reactions to genetic advancements, particularly through the lens of the Human Genome Project and its Ethical, Legal, and Social Implications (ELSI).
