Genomes and Society

Final exam Units 3-5

what is bioethics

it examines ethical issues in health care, health science, and policy

what does bioethics question

our attitude to basic human values and society’s responsibilities for the life and health of its members

what does bioethics evaluate

how medical technology can change the meaning of health and effect the way we live and die

what does bioethics consider

the right and wrong of decisions

what are some of the unethical research throughout history

nazi research by mengele
tuskegee experiment
willowbrook study
human radiation experiments by te US DoD and AEC

waht was the nazi research by mengele

twin studies to study hypothermia, head injuries, etc.

what was rhe tuskegee experiment of 1932-1972

american researchers purposely withheld treatment for 399 african americans with syphilis for the sole purpose of studying the longterm effects of the disease

what was the willowbrook study of 1963-1966

children with developmental disabilities were deliberately infected with hepatitis (some were even fed fecal matter) purpose was to examine the course of the disease and to test a potential immunization

what was the human radiation experiments by the DOD and AEC

• feeding radioactive material to mentally disabled children

• enlisting doctors to administer radioactive iron to impoverished pregnant women

• exposing US soldiers and prisoners to high levels of radiation

• irradiating the testicles of prisoners which caused severe birth defects

• exhuming bodies from graveyards to test them for radiation (without the consent of the families of the deceased)

what is the declaration of helsinki

the primary principle is respect for the individual, their right to self determination and the right to make informed decisions regarding participation in research initially during and after the research.

what does the declaration of helsinki state in regards to the investigators duty

that it is solely to the patient

what does the declaration of helsinki state about the subjects welfare

that it must always take precedence over the interests of science and society

what does the declaration of helsinki say about ethical considerations

that they must always take precedence over laws and regulations

when was the declaration of helsinki made and how often is it updated

1964- and every few years

what are some of the issues within genetics/genomics research

eugenics, genetic testing, intellectual property, genetic discrimination

what is eugenics

the science which deals with all influences that improve the inborn qualtities of a race also with those that develop them to the utmost advantage

who and when coined eugenics

sir francis galton in 1883

where are other notable areas where eugenics was discussed

plato- discussed the need to supply society with genetically improved human beings and suggested how, and rome and sparta- infanticide to remove weak babies

what are some of the unfit human traits within eugenics

feeblemindedness, epilepsy, criminality, insanity, alcoholism, and pauperism

how quickly did they think they could breed out most of the unfitness with eugenics

3 generations

what is positive eugenics

to increase reproduction in families with desirable traits

what is negative eugenics

to limit reproduction in families with undesirable traits

what is the issue with eugenics

who decides what is desirable and undesirable

what do some people say is desirable in eugenics

emotional stability, strong character, considerateness, intelligence, high moral standards, and a feeling for the public welfare

who is the father of eugenics

charles davenport
he is credited with the popularization of eugenics too

what did charles davenport rely on

mendels work

what are some respectable studies from Davenport

eye color, hair color, hair texture, and pigmentation, but also went on to apply results to complex human traits like intelligence

what are some reasons genetics is not simple

we dont understand everything about heredity, critical thought is vital, they must avoid value judgement, and cant concatenate assumptions

what is the problem with not understand everything about heredity

should we categorize people based on limited knowledge… or worse false knowledge

why is critical thinking important in genetics

all claims, regardless of whether they fit your assumptions or not, should be subject to critical analysis

why do we need to avoid value judgements in genetics

a flaw to one person may be a virtue to another

why cant we concatenate assumptions

an individual may have a particular trait but that does not imply that they have another and another and another. dont create a false picture from a single point

what does it mean that genetics is a might fine hammer but not everything is a nail

individuals are the result of gene products interacting with each other and with the environment. dont disregard one component at the expense of another

why is it important to understand why reductionism is essential for beginning to understand but is not sufficient for thorough understanding

because much of what we learn is a simplistic explanation to get the basic idea and concepts but the reality is often very much more complex

who were some of the people that attended the international eugenics congresses of 1912, 1921, and 1932

alexander graham bell, and winston churchill

what organizations were formed for eugenics between 1900-1920a

ERO- Eugenics Record Office
ABA- American Breeders Association
The Race Betterment Foundation
The American Eugenics Society
The Galton Society

what is the fitter family contest

a contest held at the kansas state fair in 1920 where families submitted an abridged record of family traits and a team of MDs performed psychological and physical exams on family members, gave the family an overall score and the family with the highest grade average was the winner

what did virginias racial integrity act of 1924 followed by bama and georgia do

miscegenation laws against mixing races

what were limits on eastern and southern europeans based on

IQ tests, and inmate/asylum studies

what act made some new immigration laws

immigration restriction act of 1924

what was the first state and when to make sterilization laws

indiana in 1907

what law defines the socially inadequate classes

model eugenical sterilization law by laughlin in 1922

what populations did laughlin stress the need to sterilize

populations that were inadequate from physical appearance, to socioeconomic status

who was the first to be sterilized

carrie buck in VA

why was carrie buck sterilized

her mother was in an asylum, she gave birth at 17 out of wedlock, and her daughter was determined to be feebleminded at 7 months

where were there sterilization movements

france, norway, sweden, denmark, russia, cuba, brazil, mexico, canada, and japan

where were there eugenic sterilization laws passed

alberta 1928, sweden and norway 1934

what law did nazi germany government adopt

laughlins model eugenical sterilization law

how many people were sterilized by the nazis

more than 350,000

who was awarded an honorary degree from the university of heidelberg in 1936 and what was it for

laughlin for work in the science of racial cleansing

what is an aryan society

This society was organized around a hierarchical class system known as the varna system, which divided people into four main groups based on occupation and social role

who were the marriage laws for in 1935

the prohibition was between aryans, jews, and the eugenically unfit

who all did the nazis kill because of eugenics

jews, mental patients, gypsies, slavs, and social democrats

why is eugenics flawed

it does not recognize the complexity of human traits, disregard of environmental/ social factors, skewed results, linking undesirable traits with racial and ethnic groups, disregard of effects on genetic diversity, flawed IQ testing

what was eugenics deemed as and what was it actually

deemed as a pseudo-science but was mainly a social movement

why did eugenics decline

the atrocities of the nazis, emerging evidence against eugenic claims, opposition from the church

what does DTC mean

direct to consumer

what are some DTC genetic testing

23and Me, Ancestry DNA, gene by gene, etc.

where are DTC genetic testing banned

france, and germany

what are the pros to DTC genetic testing

patient/ individual autonomy, empowerment in the form of informed choices on lifestyle, diet, repro, and privacy, you control the info you bought separate from insurance and medical records

cons of DTC genetic testing

lack of regulation, interpretation, unclear goals of companies, unsupported claims

what risk is associated with DTC genetic testing

the risk of non-consensual testing

what are some issues with the interpretation of DTC

having a given allele does not alwasy mean gettin a disease, risks associated with having a particular allele may not be accurate based on current research

what is revealed in if information is revealed or not revealed

there is no difference or increased risk for harm

what are best practices for interpretation of DTC results

promote informed decision making, employ proven health communication techniques in disclosure, provide guidance on appropriate next steps

what are intellectual properties

simply ideas; words, protocols, recipes, symbols, interventions, innovations, and new varieties of organism

what does IP stand for

intellectual property

how have genes and genomes historically been considered in terms of IP

freely available (no one invented them)

what did the UN in 1983 believe about plant genetic resources

that they are a heritage of mankind and should be available without restriction

what do countries that are developing believe about genetic resources

they want to patent genetic resources arising from their regions

what are the pros to patenting genes

reduces competition allowing companies (especially smaller ones) time to exploit discoveries for monetary advantage
encourages research and evelopment in private industries
provides opportunities for investment in innovation

cons of patenting genes

hinders research by restricting access for up to 20 years
leads to monopolization of genes
slows down medical results by limiting the number of companies allowed to perform a genetic test

what is the CBD

convention on biological diversity

what are the 3 main objectives of CBD

• conservation of biological diversity

• The sustainable use of the components of biological diversity

• the fair and equitable sharing of the benefits arising out of the utilization of genetic resources, thereby contributing to the conservation and sustainable use of biodiversity

what is the nagoya protocol 2010

a supplementary agreement to the CBD specifically to implement objective 3: the fair and equitable sharing of the benefits arising out of the utilization of genetic resoources

what were the obligations of the nagoya protocol

create legal certaintu, clarity, and transparency, create conditions to promote and encourage research contributing to biodiversity conservation and sustainable use, consider the importance of genetic resources for food and agriculture for food security

what was the cartegena protocol 2003

supplementary agreement to the convention on biological diversity CBD specifically to protect biological diversity from the risks of genetically modified organisms

what was the objective of the cartegena protocol

to contribute to ensuring an adequate level of protection in the field of the safe tranfer handling and use of living modified organisms resulting from modern biotechnology that may have adverse effects on the conservation and sustainable use of biological diversity, taking also into account risks to human health and specifically focusing on transboundary movements

what does genetic information include in terms of genetic discrimination

an individuals genetic tests, genetic tests of family members, the manifestation of disease or disorder in family members, requests for or receipt of genetic services by an individual or family member, genetic information of a fetus or embryo

what is GINA

genetic information nondiscrimination act

when was GINA passed

unanumously by congress in 2008

what does GINA do

prohibits group and individual health insurers from using a persons genetic info in determining eligibility or premiums, prohibits employers from using a persons genetic information in making employment decisions such as hiring, firing, job assignments, or any other terms of employment, prohibits employers from requesting requiring or purchasing genetic information about persons or their family members

what has been the subject of genetic analysis since the advent of genetics

human ancestry

what are the 2 major avenues

early studies focused on mitochondrial analysis
other early work focused on the Y-chromosome

what have the more recent studies of ancestry shifted to

the focus has shifted to nuclear data

what is the central concept in ancestry analysis

coalescent theory

what does the coalescent theory apply to

mitochondrial, y-chromosome, and nuclear analyses

what lineage is mitochondria inherited through

the maternal lineage

what is the only mitochondria that can give rise to the zygotes mitochondria

the mitochondria in the egg

how is mitochondrial DNA passed down

from mother to daughter and son

what happens to the mitochondria inherited by sons from their mothers

they never make it to their own children

some animals are an exception for waht rule

the maternal mitochondrial inheritance

what are plants in terms of mitochondrial inheritance

some are maternally inherited others are bipartental

what does studying mitochondrial DNA sequences allow scientists to look at

it allows them to look at human and other animal lineages without the complications introduced by meiosis and recombination

what is another way to put how midochondria allow geneticists to trace ancestry

it is essentially tracing it as if it was an asexually reproducing organism

what do differences in mitochonrial sequences allow

differences in mitochondrial sequences be used to estimate temporal separartion of lineages

how is estimating tempora separation of lineages done

by assuming that mutation rates are fairly constant (this may or may not be true)

what does the coalescent theory give rise to

the mitochondrial eve

what is the coalescent theory

the woman from whom all living women and therefore all humans are descended

what does the coalescent theory not imply

that this was the only existing woman at that time and only that her mitochondrial haplotype is the one that made it all the way to today