Week 1: Down Syndrome focus
Lecture 1:
● The S&T we develop is shaped by society, and the S&T we create influences society
back. Intertwined relationship
● Vaccination: key example for finding balance between individual autonomy and societal
well-being AND to show the vast collaboration between many stakeholders
○ Some hesitancy in COVID-19 - medical reasons, too much info to navigate,
antivax
○ Umbrella effect regardless - herd immunity
○ Complex debate - individuality or society?
○ Many components: people, infrastructure and logistics, goods and products,
systems and structures, and of course knowledge and experience
● Medicine development can be unexpected - example is Viagra (initially Sildenafil for
blood pressure regulation). Helped normalize conversations about sexual health
● Societal values can influence medications - Oral contraceptive for men not yet
developed due to the view that it is the woman’s responsibility. Will there be a demand
for more equitable contraceptives in the future?
● Advantages and issues of S&T development - growing inequalities, unexpected and
unwanted effects, pollution and emissions.
● Mismatches between S&T and society:
○ Science advances faster than laws, regulations, and ethical frameworks can keep
up.
○ Many people don’t fully understand complex genetic or technological advances,
yet are affected by them - NIPT or gene editing may be misunderstood as
guarantees or as routine, without grasping the nuance of probability or risks.
○ Advanced S&T often benefits wealthier individuals first, widening inequality →
Genetic screening or IVF with gene editing may be only available to the rich.
○ Scientists may frame issues (like disability) as biological “problems” to be fixed,
while society or individuals may view them as part of identity or diversity →
Editing out Down Syndrome may be seen as progress in science, but as erasure by
the DS community.
○ Science often pushes for "what can we do next?" while society may need
reflection on "what should we do?"
○ Decisions in S&T are often made by scientists, policymakers, or companies —
not the communities most affected.
WG 1:
● Negative societal implications of NIPT
, ○ Negative stigma towards people who have DS - that it’s something that needs to
be fixed. The fact that you screen for something makes it more undesirable -
subconscious distancing/bias towards the DS community → counter argument
could be that NIPT does not fix anything necessarily, it is just a test on its own.
○ Normalization of selective abortion and modern eugenics → society may
slowly accept that certain lives and less worth living and may rearrange
reproduction for desirable heritance.
○ Reinforcement of ableism → favoritism towards able bodied people - more
attitude towards people with DS
○ Reduce disability diversity and representation → less people representing and
supporting the DS community
○ Parental pressure → societal pressure to act on the results as its “responsible”.
Your freedom of choice to test or not will put more pressure on you - forces a
divide in society. They later may feel guilt or feel that they are carrying the
burden alone.
○ Moral and ethical exclusion/dilemmas → families may feel judgement based on
their decision to terminate or keep, potential polarization either way
○ False sense of control → society may start to view babies as “designable” or
“customizable”, leading to unrealistic expectations and less acceptance of natural
variation.
○ Because NIPT is covered by insurance, all people can afford it and not just the
rich people.
○ “The advantages of NIPT are for an individual woman, but disadvantages are for
society.”
○ Society has very easily accepted termination with little public debate on the
ethical issues in prenatal screening, where the voice of people with DS is
excluded.
● Positive societal implications of NIPT
○ Increased education and access → more inclusive conversations and genetic
understanding.
○ Better support systems → increased awareness of the frequency of the condition
can help development of tailored developmental programs for parents who decide
to keep the baby after diagnosis.
○ Autonomy and empowerment → providing individuals with information
enables the support of reproductive rights and decision-making in society.
○ Early diagnosis reduces judgement → early termination prevents judgement
from rest of society as they may be unaware of the pregnancy.
○ Mentally better for the mother earlier on before forming connection with child
Stakeholders: Pregnant woman, parents with DS child with positive experiences, parents with
DS child with negative experiences, and healthcare workers.
Overall: our societal values inform what technology we develop and these technologies in turn
change and influence our societies.
Lecture 1:
● The S&T we develop is shaped by society, and the S&T we create influences society
back. Intertwined relationship
● Vaccination: key example for finding balance between individual autonomy and societal
well-being AND to show the vast collaboration between many stakeholders
○ Some hesitancy in COVID-19 - medical reasons, too much info to navigate,
antivax
○ Umbrella effect regardless - herd immunity
○ Complex debate - individuality or society?
○ Many components: people, infrastructure and logistics, goods and products,
systems and structures, and of course knowledge and experience
● Medicine development can be unexpected - example is Viagra (initially Sildenafil for
blood pressure regulation). Helped normalize conversations about sexual health
● Societal values can influence medications - Oral contraceptive for men not yet
developed due to the view that it is the woman’s responsibility. Will there be a demand
for more equitable contraceptives in the future?
● Advantages and issues of S&T development - growing inequalities, unexpected and
unwanted effects, pollution and emissions.
● Mismatches between S&T and society:
○ Science advances faster than laws, regulations, and ethical frameworks can keep
up.
○ Many people don’t fully understand complex genetic or technological advances,
yet are affected by them - NIPT or gene editing may be misunderstood as
guarantees or as routine, without grasping the nuance of probability or risks.
○ Advanced S&T often benefits wealthier individuals first, widening inequality →
Genetic screening or IVF with gene editing may be only available to the rich.
○ Scientists may frame issues (like disability) as biological “problems” to be fixed,
while society or individuals may view them as part of identity or diversity →
Editing out Down Syndrome may be seen as progress in science, but as erasure by
the DS community.
○ Science often pushes for "what can we do next?" while society may need
reflection on "what should we do?"
○ Decisions in S&T are often made by scientists, policymakers, or companies —
not the communities most affected.
WG 1:
● Negative societal implications of NIPT
, ○ Negative stigma towards people who have DS - that it’s something that needs to
be fixed. The fact that you screen for something makes it more undesirable -
subconscious distancing/bias towards the DS community → counter argument
could be that NIPT does not fix anything necessarily, it is just a test on its own.
○ Normalization of selective abortion and modern eugenics → society may
slowly accept that certain lives and less worth living and may rearrange
reproduction for desirable heritance.
○ Reinforcement of ableism → favoritism towards able bodied people - more
attitude towards people with DS
○ Reduce disability diversity and representation → less people representing and
supporting the DS community
○ Parental pressure → societal pressure to act on the results as its “responsible”.
Your freedom of choice to test or not will put more pressure on you - forces a
divide in society. They later may feel guilt or feel that they are carrying the
burden alone.
○ Moral and ethical exclusion/dilemmas → families may feel judgement based on
their decision to terminate or keep, potential polarization either way
○ False sense of control → society may start to view babies as “designable” or
“customizable”, leading to unrealistic expectations and less acceptance of natural
variation.
○ Because NIPT is covered by insurance, all people can afford it and not just the
rich people.
○ “The advantages of NIPT are for an individual woman, but disadvantages are for
society.”
○ Society has very easily accepted termination with little public debate on the
ethical issues in prenatal screening, where the voice of people with DS is
excluded.
● Positive societal implications of NIPT
○ Increased education and access → more inclusive conversations and genetic
understanding.
○ Better support systems → increased awareness of the frequency of the condition
can help development of tailored developmental programs for parents who decide
to keep the baby after diagnosis.
○ Autonomy and empowerment → providing individuals with information
enables the support of reproductive rights and decision-making in society.
○ Early diagnosis reduces judgement → early termination prevents judgement
from rest of society as they may be unaware of the pregnancy.
○ Mentally better for the mother earlier on before forming connection with child
Stakeholders: Pregnant woman, parents with DS child with positive experiences, parents with
DS child with negative experiences, and healthcare workers.
Overall: our societal values inform what technology we develop and these technologies in turn
change and influence our societies.
