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STS 3013 > Midterm 1 > Flashcards

Midterm 1 Flashcards

1
Q

Why did doctors feel justified in withholding information in each of the following three cases:

a. Tuskegee Syphilis Study
b. Jewish Chronic Disease Hospital study
c. The treatment of Henrietta Lacks at Johns Hopkins Hospital

Are any of these cases benevolent deception, or were patients simply being used as a means to an end?

A

-

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2
Q

The Henrietta Lacks case involves three interlinking ethical issues- violations of informed consent, privacy breeches, and control over biological materials. Summarize each of these issues and consider which areas of ethical misconduct, if any, the Nuremberg Code should have prevented.

A
  • Henrietta Lacks did not give informed consent when signing the consent forms for her surgery
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3
Q

Describe the four models of physician-patient interaction. Which do you think was most evident in:

a. Physician’s interactions with Henrietta Lacks
b. Physician’s interactions with Deborah Lacks and her siblings

A

c

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4
Q

Discuss the cases of HeLa, Trovan, and AZT. Do any of those cases violate the Belmont report’s principle of justice?

A

c

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5
Q

Some have argued that the benefits of the HeLa cell line justify any harm done to the Lacks family in the collection of her tissue. Explain how that position could be argued and consider if the same might be said of He Jianjui’s research on gene editing.

A

c

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6
Q

What are some of the analytical tools that became important in the study of priority disputes in science? How might these tools be applied to study a contemporary controversy like the cloning of pets?

A

c

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7
Q

What was the HeLa bomb?

A

c

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8
Q

What is the signifiance of the HPV vaccine?

A

c

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9
Q

What was the signifiance of the polio vaccine?

A

c

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10
Q

Who were McKusick and Hsu?

A

c

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11
Q

What was the Moore case?

A
  • Official title is Moore v. Regents of University of California (1988)
  • Involves Dr. David Golde who patented the Mo cell line
  • Moore accused him of malpractice and property theft
  • Sandoz sued $15 million for rights to develop the Mo cell line
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12
Q

Explain essential biologicals.

A

c

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13
Q

What were the Jim Crow laws?

A

Laws enforcing racial segregation in Southern states between 1877-1950s Civil rights movements
Constitutionality of the ‘Separate but Equal’ principle held up in 1896 Supreme CourtPlessy v. Ferguson decision
Enforced by vigilantism

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14
Q

What was the Great Migration?

A

The migration of African Americans of the deep South to Industrial cities
Happened from 1910-1970

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15
Q

Who was George Gey?

A

Researcher who cultures HeLa

Had a major role in distrubting HeLa cell line.

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16
Q

Who was Richard Telinde?

A
  • Cervical carcinomas are divided into two types; invasive carcinomas (have penetrated the surface of the cervix) and noninvasive carcinomas (also known as carcinoma in situ)
    • In 1951, most doctors believed that invasive carcinoma was deadly while carcinoma in situ was not
      • Therefore, they only treated invasive carcinoma very aggressively and did not treat carcinoma in situ because they thought it wouldn’t spread
      • Telinde disagreed
    • Telinde’s theory was that carcinoma in situ was an early stage of invasive carcinoma
      • He, therefore, treated all carcinoma in situ as well as invasive carcinoma, often removing the entire uterus, cervix, and most of the vagina
      • Critics said this measure was extreme and unnecessary
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17
Q

What was the Tuskegee syphilis study?

A

1932-US Public Health Service and the Tuskegee Institute
Record natural history of of syphilis in order to develop treatment programs
Study involved 600 African American men (399 w/ syphilis, 200 w/out)

The medical situation at outset of experiment:
35% of reproductive age population
Treatment success less than 30%
Mercury and bismuth treatments

Men told they they were being treated for ‘bad blood’
Free med exams, meals and burial insurance
Men not given proper treatment to cure illness
Original 6 month study extended 40 years
1940s- penicillin
1972- information leaked to press by whistleblower
Advisory panel declares the study ethically unjustifiable-knowledge gained of little value compared with risks to subjects

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18
Q

What was the HeLa Distribution Centre?

A

a

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19
Q

Explain the Microbiological Associates.

A

s

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20
Q

What is benevolent deception?

A

s

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21
Q

Who was Southam?

A

s

22
Q

What was the Jewish Chronic Disease Hospital?

A

s

23
Q

What is spontaneous transformation?

A

s

24
Q

What is the golden age of medicine?

A
  • From 1900s to the 1950s
  • Found treatments for syphilis, diabetes, strep, and staph
  • The vitamin market exploded in the 30s
  • During WW2, antibiotics were put into production to fight about TB
  • In the 50s, the vaccine for polio was invented by Salk.
25
Q

What was the pediatric scurvy research?

A
  • An example of human research subjects.
  • A research study conducted by Hess and Fish
  • Diets of orphaned children modified to induce scurvy and rickets

Criticism:
Safeguarding the vulnerable
Pain and suffering
Voluntary consent

Defenses:
Progress of medicine
Conditions uniquely uniform and controllable
Paying back society

26
Q

What is the Nuremberg Code?

A

Above all, participation in research must be voluntary.
The results of research must be useful and unobtainable by other means
The study must be rationally based on knowledge of the disease or condition to be studied.
IT must avoid unnecessary suffering
The study cannot include death or disabling injury as a foreseeable consequence
Its benefits must outweigh its risks
The study must use proper facilities to protect participants
The study must be conducted by qualified individuals
Participants may withdraw from the study if they wish
Investigators must be prepared to stop

27
Q

What was the Helsinki Declaration?

A 
Section A:
Prioritizing participant health
Standards of monitoring
Section B:
Expanded view of ‘voluntarism’
Section C:
Combining research with clinical care
28
Q

Who was Henry Beecher?

A 
Ethics and Clinical Research (1966)
Similarity between Nazi science and American research
22 unethical studies
Preventable deaths
Undue risks
Use of vulnerable subjects
Administrative convenience
Implications: misconduct in a peace-time, democratic setting?
29
Q

What was the National Research Act and Belmont Report?

A 
National Research Act
Regulatory system
Written consent
Institutional Review Boards
Belmont Report
Principles to resolve complex ethical questions
Respect for persons
Beneficence
Justice
Principles: Respect for persons, Beneficence, Justice:
Practices:
Informed Consent
Risk and Benefit Analysis
Appropriate Selection of Patients

Respect for Persons: Autonomy is a form of personal liberty of action where the individual determines their own course of action in accordance with their chosen plan. Respect for individuals as autonomous agents entitles them to such autonomous determinations without limitation on their liberty being imposed by others

Beneficence: Requires not only that we treat persons autonomously and that we refrain from harming them, but also that we contribute to their welfare including their health. Thus the principle asserts the duty to help others further their important or legitimate interests…to confer benefits and actively to prevent or remove harms…and to balance possible goods against the possible harms of an action.

Justice: Requires the fair and equal distribution of benefits and risks of participation in a research study. Recruitment and selection of participants must be done in a fair and equal manner. Justice forbids exposing one group of people to the risks of the research solely for the benefit of another group. Community representatives have the responsibilty to ensure that community participation in a research study is justified.

30
Q

What was the parental model?

A

Goal: Patients receive the interventions that best promote their health and wellbeing
Physician presents the patient with selected information to encourage patient to consent to intervention the physician considers best.
Assumes that there are shared objective criteria for determining what is best
Physician has duty to seek the best interest of the patient
Physician acts as a guide
Vision of autonomy: assent or rejection of physician’s choices

31
Q

What was the informative model?

A

Goal: Physician provides patient with all relevant information, patient selects and then physician carries out the selected interventions
Assumes that patients values are known, what they need is facts
Physician is a technical expert
Patient autonomy involves control over medical decision making

32
Q

What was the interpretive model?

A

Goal: To identify patient’s value and help patient to select the available treatments that realize those values.
Physician provides facts
Physician assists patient in making their own values more clear
Physician is a counselor
Autonomy involves self-understanding as the patient comes to better understand who they are and act in a manner that is consistent with their identity.

33
Q

What is the deliberative model?

A

Goal: help the patient determine and choose the health-related values relevant to the clinical situation.
Physician’s values and patient’s values are clarified
Physician acts as a friend presenting and evaluating alternative approaches
Autonomy involves dialogue about preferences, alternatives, values and their implications for treatment

34
Q

Explain social justice.

A

‘The good of the whole community, where that is taken to include both the good of each and the good of all, in an acknowledgement that one depends on the other.’

- Respect
- Fairness
     - Right distribution of risks
     - Right distribution of benefits - Two issues of social justice in medicine include;
- Rights of patients during trials 
- Rights of patients following completion of trials
35
Q

What were the AZT trials?

A

1997 AZT trials
Following successful trial of drug therapy for HIV transmission from mother to child
At the time, 65% of world’s population of HIV infected people live in sub-Saharan Africa
They experience a higher rate of transmission of HIVE from mother to child (30-45%)
According to one estimate, more than 80% of deaths among people 25-55 were attributable to HIV infection
Controversy involved the participants in control arm of the trials
Placebo-control groups

For:
Local standards of treatment did not include HIV prophylactic intervention
Placebo controlled studies are most efficient way to obtain information
It would be ‘ethical imperialism’ to use US standards to design medical research

Against:
Duty to protect all members of a trial
Placebo controlled studies are easily compromised
‘Ethical relativism’ of experimenters justifies trials that would never be possible in US, creating incentive to exploit developing and post-colonial countries

Revision of the Helsinki Declaration- placebos should not be used when standards of treatment are known. The benefits, risks, burdens, and effectiveness of new treatments must be tested against the best alternative methods
US FDA
Alternative guidelines
‘whether a particular placebo controlled trial of a new agent will be acceptable to subjects and investigators when there is a known effective therapy is a matter of patient, investigator, and IRB judgement, and acceptability may differ among regions and populations chosen. ‘
- lack of consent

36
Q

What were the Trovan trials?

A

Meningitis that took place in Nigeria

- Lack of consent

37
Q

What is an Entrepreneurial Body?

A
  • Body is a source of valuable and marketable materials
  • It is commodified
  • Why?
    1. ) Shift toward joint ventures between university and industry.
    2. ) Patenting of genetically modified organisms.
    3. ) Expanding markets for tissue.
38
Q

What is the Human Genome Project?

A
  • Genetic mapping
  • Understanding and surveillance of diseases
  • Origin of individual racial groups
  • Preservation from ‘extinction’
  • Clash with Indigenous groups
    • Racial profiling
    • Future uses of information
    • Biopiracy
39
Q

What is Cord Blood?

A
  • Cord blood is divided between public blood banks and family blood banks.
  • In the public blood bank system, the blood is donated to society
  • A third is discarded, a third is used for unrelated transplants, and only a third of the total amount of blood is used for related transplants
  • In family blood banks, the family owns the cord blood
  • A third is stored without use, another third is used for stem cell therapy, and the final third is used for related transplants
40
Q

What is Myriad Case?

A
  • The case involving a company that found the genetic coding for breast cancer and ovarian cancer
  • Involve patent to reveal DNA of patients, which is owned by patients not by doctors and scientists
  • Need more info
41
Q

What is CRISPR?

A

Clustered Regularly Interspaced Short Palindromic Repeats (CRISPR)
Discovered as part of basic research into how bacteria fight viral infections
CRISPR allows scientists to delete or insert DNA in cells

Disease prevention
Mutations to BRCA1 and BRCA2 breast cancer genes
Gene drives
Control of malaria through mosquito population
Treatments
Cancer

Deletions and rearrangements of 100s or 1000s of DNA letters
Mutations far from target site
Mutations may be benign or cancerous

42
Q

Who was He Jiankui?

A

Chinese scientist He Jiankui
Alters CCR5 gene, a gene that creates a protein that makes it possible for AIDS to infect cells
Implants embryos in a volunteer
Twin girls:
Nana- both copies of CCR5 gene disabled
Lulu-only 1 copy of CCR5 gene is disabled

The study was risky
Changes will be inherited by all children’s progeny
Susceptibility to West Nile Virus, Japanese encephalitis, influenza
The study didn’t address an unmet medical need
There was a risk of ‘mosaicism’
The study was carried out in secrecy
The volunteers didn’t have adequate information to provide informed consent

There was an unmet medical need
Even routine medical procedures carry some risk
Mutations related to CRISPR have overwhelmingly been benign
Objectors have hyped the risks of CRISPER

43
Q

What is mosaicism?

A

The term mosaicism is used to describe the presence of more than one type of cell in a person

44
Q

Explain breaching experiments.

A 
Harold Garfinkel ‘breaching experiments’
Social processes:
Language and imagery
Influence of political and economic interests
Boundary work
Alliances
Trust
45
Q

What are priority disputes?

A

See HIV Co-Discovery

46
Q

Explain the co-discovery of HIV.

A 
Co-discovery of Human Immunodeficiency Virus (HIV)
Gallo (1981):
T cells
Cell culturing Techniques
Montagnier & Barre-Sinoussi(1983):
Isolates new virus from AIDs patient
Publication in Science
Gallo (1985)
Isolates virus
Techniques for growing  virus
Test for detecting virus in blood
Publication in Science
Controversy
Similarity in genetic sequence of AIDS virus
Did Gallo use French virus for his own experiments?
47
Q

What is cold fusion?

A 
Pons and Fleishmann ‘Cold Fusion’
Studying controversies: The Strong Programme of Social Construction
Openings and closures of debates
‘Symmetrical approach’
Avoiding the ‘sociology of error’
48
Q

Explain the Vitamin C and Cancer controversy.

A

An accepted scientific fact: Vitamin C is not a treatment for cancer
A typical argument:
Researchers eventually learned that vitamin C does not cure cancer because vitamin C does not cure cancer
But there is a problem with this argument…
Vitamin C believers
Dr. Linus Pauling
Nobel laureate in molecular biology
‘Molecular disease’
Sickle cell anemia
‘Orthomolecular medicine’

Uncovering networks:
Dr. Ewan Cameron
Scottish surgeon
‘Holistic health’ proponents
Health food industry
49
Q

What is sociology of error?

A

An accepted scientific fact: Vitamin C is not a treatment for cancer
A typical argument:
Researchers eventually learned that vitamin C does not cure cancer because vitamin C does not cure cancer
But there is a problem with this argument…

50
Q

What is dog cloning?

A 
Calculating potential risks and benefits
Animal suffering
Pregnancy losses, sickness and death of young 
The effects of cloning on genetic variation
Effects on human welfare
Food safety
Values:
Cloning is ‘unnatural’
Cloning gives too much power to humans
Commodification of animals
Implications for unwanted animals

STS 3013 (1 decks)

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