1. Legal, Ethical or Moral?
Progress and Lingering Questions
for the use of HeLa Cells

2. Moral vs Ethical vs Legal
 What's a good definition for each of these
terms?
 Why is it important to draw a distinction
between them?

3. Definitions
 Moral: private, personal
interactions
 Ethics: professional
interactions
 Law: society as a whole
 How are they
developed?
 What are the
consequences for
breaking these codes?

4. Example
 1. Someone kills his business partner

5. Examples
 2. Married CEO has an affair with his
neighbor

6. Examples
 3. Plagiarism of a term paper

7. Examples
 4. Speeding

8. Examples
 5. Drinking

10. HeLa moral issues
• Is it moral to use human genetic material for
testing?
• Is it moral to clone human genetic material
or combine it cross-species?
• What moral obligation to we have to the rest
of society to allow our bodies to be used?

11. HeLa moral issues
• Are genetic tests for disease moral? In
adults? In unborn babies?
• Is it moral for people to profit from the
development or sale of human genetic
material?
• What moral responsibility do we have to
ensure people have access to health care?
Education?

12. HeLa ethical issues
• Ongoing changes and updates—as recent
at 2011 for the DHHS
• March 2013, German scientists published
genome sequence of HeLa line; no family
consent
• Genetic information can be stigmatizing—
Alzheimer’s, bipolar disorder, breast cancer
• Employers/health ins. cannot use information,
but life insurance, disability coverage etc. can

13. HeLa ethical issues
As Francis S. Collins, director of the National
Institutes of Health, says: “This latest HeLa
situation really shows us that our policy is lagging
years and maybe decades behind the science. It’s
time to catch up.” The regulations governing this
sort of research were written in the 1970s, long
before anyone imagined what you could learn from
a bit of DNA. They are largely based on the now
outdated belief that if samples are “anonymized”
(i.e., your name is removed), there’s no need to get
consent before using them in research.

14. HeLa ethical issues
The problem, says Yaniv Erlich, a fellow at the
Whitehead Institute for Biomedical Research, is
that anonymity vanishes when it comes to DNA:
“People don’t realize it’s impossible to hide genetic
information once it’s out there.” He and his
colleagues recently proved that it’s possible to use
online public databases to find the identities of
people whose anonymous DNA samples had been
sequenced and published online. Yet researchers
aren’t required to tell you that there is no guarantee
that a genome, once sequenced, will stay private
or anonymous.

15. HeLa ethical issues
• What is informed consent? How informed is
informed? What role does progeny play?
• Should patients’ anonymity be protected? Is
this possible in the genetic age?
• Is it ethical for corporations to patent and
profit from the development or sale of
human genetic material?

16. HeLa legal issues
• What body parts can be sold? What can’t?
• Ex. Blood, kidney, sperm/eggs
• At what point does our legal ownership of
our body parts cease?
• What right to legally-protected privacy do we
have?
• Ex. HIPPA
• Can people patent human body
parts/genetic information?
• Ex. June 2013 Supreme Court case

17. HeLa legal issues
• How can we ensure public policy catches up
with the scientific changes, changes in
public opinion, and changes in ethical
standards?
• What are appropriate punishments for
people who violate laws concerning medical
ethics/genetic privacy?
• How do we enforce US laws among
international scientific teams?