Genetic Testing and Personalised Medicine: Ethical, Social and Regulatory Challenges Flashcards
Definition of geneticisation
Tendency to define differences between individuals as a result of genetics
Definition of biosociality
Social bonds created between people with similarities in genetic characteristics
Definition of personalised medicine
Matching drug treatments to groups with certain genetic markers
Definition of stratified medicine
Optimise treatment by identifying subgroups with similar disease profiles/drug responses
Definition of precision medicine
Tailor treatment to patients during prevention, diagnosis, treatment and monitoring
Uses data beyond the clinic
Definition of individual medicine
Consider why this patient is different and adapt treatment to match characteristics of the patient
Definition of filter bubble
Only info that is relevant to the use can be seen
Definition of social exclusion effect
Only those with the resources can contribute to the data set
What are the 3 viewpoints of ethics
Medical ethics
-philosophers and physicians
Bioethics
-identify and address issues raised by genomic research
Social sciences
-explore political, social, individual conditions and practices that shape what new technology and science is adopted by society
What were the 2 possible effects of genetic testing on identity
Geneticisation of society => enlightened geneticisation
- expected the increased tendency to define differences between individuals as a result of genetics
- however in complex traits that have several factors, genetics is assumed to play the most dominant role
Biosociality
-genetic characteristic similarities => social groups built around these differences
What are the 2 main social effects of genetic testing on identity and behaviour
People often integrate genetic info into existing identities and narratives
Growing proliferation of genetic predisposition testing for complex diseases does not affect behaviour
We have no good data on effects of identities and long term strategies
What are the 2 negative personal effects of genetic testing
People who are at risk for an illness => harm caused by excess worry and unecessary treatment
People are disempowered by their result
What are the 2 positive personal effects of genetic testing
More participation, personalised, preventative, predictive
People are empowered by results, somatic individualisation
What are the 4 main effects of genetic testing on justice
Risk
Discrimination
Individualisation of duties and responsibilities
End of genetic exceptionalisation
Describe the risks that can arise as a result of genetic testing
People in lower SE groups have higher health risks and worse health outcomes
Describe the discrimination that can arise as a result of genetic testing
Fear of genetic discrimination by employers, insurance
Unlikely as info less useful than family history
Current data not representative of all ethinicities, non white people may not benefit from knowing their result
Describe the individualisation of duties and responsibilities that can arise as a result of genetic testing
People are forced to become more responsible for their actions and consequences for not changing their behaviour as they have a genetic predisposition
Describe the end of genetic exceptionalisation that can arise as a result of genetic testing
Other data such as family history are just as sensitive and predictive as genetic info
Describe how patient participation in healthcare has changed over time
Increased emphasis of patient participation and shared decision making
Increased use of ‘beyond the clinic’ health data generation
-people add their own symptoms and treatments to an online database
What are the effects of increased participation in health
In what parts of healthcare are they participating in
Increased self diagnoses especially if people cannot access HC services easily and buy drugs online
Increased participation in
- data generation
- analysis
- interpretation
- translation
What is personalised medicine
What is the main criticism of personalised medicine
Initially focus on matching drug treatments to groups with certain genetic markers
Not tailored to the patient
Having a specific genetic marker does not necasserily mean that you will benefit
What is stratified medicine
Designed to optimise treatment by identifying subgroups with similar disease profiles/drug responses
What is precision medicine
Tailoring treatment to patients during prevention, diagnosis, treatment, monitoring
Uses data beyond the clinic
What is individualised medicine
Takes into consideration why this patient is different and adapt treatment to match characteristics of the patient
Where does the data for precision medicine come from
Data from medical science and research
Quanitification of info in clinical domain
Outside scientific and clinical domain (social media, apps, online databases)
What are the 5 main ethical and social challenges of genetic testing
Autonomy and rights to know/not know
Rights and interests of family members
Data protection
Avoiding discrimination
Effects on identity
What are some social, ethical and regulatory challenges of genetic testing
More emphasis on collaboration and distribution of power of data
Data analysis has become a market
Relies on patient contributions
Must not forget the importance of other types of evidence
How to include info that is important to the patient
Who controls personal health data and algorithms
Filter bubble and social exclusion effect
