Ethics in Statistical Data Collection

Sep 8, 2024

Lecture: The Impact of Statistical Gathering

Introduction

  • Speaker: Adriene Hill
  • Topic: Ethical implications and impact of statistical data collection.
  • Focus: Stories illustrating where data collection can go wrong and lessons to prevent unethical practices.

Story 1: Alexis St. Martin and Dr. Beaumont

  • Background: In 1822, St. Martin, a fur trapper, was accidentally shot, creating a gastric fistula.
  • Experiments: Dr. Beaumont conducted digestion experiments on St. Martin without anesthetics.
  • Ethical Concerns:
    • Coercion due to St. Martin's lack of options.
    • Voluntary participation and ethical treatment questioned.
  • Institutional Review Board (IRB): Ensures ethical research by checking voluntariness and other ethical standards.

Story 2: The Tuskegee Syphilis Study

  • Timeframe: 1932-1972
  • Subject: Over 600 Black men were studied under false pretenses of receiving free medical care.
  • Ethical Issues:
    • Lack of informed consent.
    • Withholding effective treatment (penicillin) from patients.

Story 3: Henrietta Lacks

  • Event: In 1951, Henrietta Lacks’ cancer cells were taken without her consent.
  • Developments:
    • HeLa cell line led to significant medical advances.
    • Lacks' family received no financial benefits.
  • Ethical Focus:
    • Importance of informed consent and comprehension of study details.

Ethical Guidelines: The Nuremberg Code

  • Creation: Post-World War II, 1947.
  • Purpose: Establish guidelines for ethical treatment of human subjects.
  • Key Principles:
    • Voluntariness
    • Informed consent
    • Beneficence (risk minimization vs. benefits)

Story 4: Digital Age Ethics (Fictional)

  • Scenario: "Parks and Recreation" episode illustrating data mining.
  • Issues: Free Wi-Fi in exchange for personal data collection.
  • Relevance: Reflects real-world data mining by companies like Facebook and Google.
  • Ethical Considerations:
    • Informed consent in digital agreements.
    • Privacy concerns and coercion in using digital services.

Modern Implications

  • Issues with Digital Data:
    • Data mining parallels historical unethical practices but in new contexts.
    • Need for ethical guidelines in digital spaces.
  • Future Challenges:
    • Balancing technological advancements with ethical data use.
    • Developing laws to protect privacy and data, similar to the Nuremberg Code.

Conclusion

  • Ongoing Discussion: Society needs to decide on ethical principles in digital and genomic research.
  • Role of Individuals: Active participation in shaping future data ethics policies.
  • Support for Education: Crash Course content relies on patron support through platforms like Patreon.

Note: This summary captures the key points and ethical considerations discussed in the lecture about statistical data gathering and its societal impact.