Henrietta Lacks: The Question of Ethics and Human Tissue

Introduction

Who owns you when it's not a part of you anymore?  When the doctor takes a blood or tissue sample, what happens to it after he has run his tests?  Are little pieces of you in a research lab somewhere?  What about your parents or grandparents?

In this project, you and your group are going to explore the story of a woman named Henrietta Lacks.  After her death, unbeknownst to her or her children, pieces of her tissue continued to thrive, revolutionized medical research, and changed the world.  When Henrietta's daughter was told about her mother's legacy, she had mixed feelings.  Would her mother have been unnerved to know that peices of her still existed?  Or would she be proud of all the lives that had been saved by her cells?

Get ready to think critically about human tissue and property rights as you become a congressman and propose a law that finds a balance between two battling perspectives.

Task

Your group is going to take on the roles of a Congressional commitee considering the ethical question of who owns human tissue.  Together, you will put together a proposal for legislation that will regulate the collection, property rights, and uses of human tissue samples.  In order to construct a thoughtful, comprehensive proposal on this complex issue, you will need to research and take notes on the topic, get information on public opinion, attempt to persuade fellow commitee members to agree with you, and make compromises with the competition.  Your proposal will be submitted to the class, who will vote on the best proposal.

Process

Part 1: Research

  • Each member of your group will explore and take note on at least 3 of the sources provided.  
  • You may perform research independently or split up the sources between you.
  • Your individual notes will be turned in as a part of the project.
  • If you choose to research cooperatively, you may provide other memebers of your group with copies of your notes, or your group may consolidate your notes together.
  • You may need to explore more than 3 sources to gain adequate understanding of the topic.
  • Your notes can be organized however you wish (by source, by subject, ect), but must be logical and reasonably easy to navigate
  • Your notes should contain all pertinent details. They should be detailed enough so you could complete the following work sheet using only your group's notes.

Part 2: Worksheet

In a word document, work individually to answer each of these questions

  1. What are HeLa cells?
  2. What hospital treated Henrietta?
  3. What type of cancer did Henrietta have?
  4. Describe what Gey did with Henrietta's cell culture and why.
  5. What types of diseases have been cured or treated with the help of HeLa cells? List at least 5.
  6. List the cases (minimum 2) surrounding ownership of human tissue and write a one to two sentence summary of each one.
  7. Answer one of the following with a minimum of 5 sentences.  Bonus points if you answer two.
  • Imagine you or a loved one suffered from one of the diseases listed in question 5.  How would that effect your perspective on this issue?
  • Imagine a scientist called and told you they were going to publish it as a part of their scientific research.  Would you ask them not to?  Why or Why not?

Part 3: Find out public opinion

  • Be the public.  Individually log onto the classroom edmoto site and post your opinion as a member of the public.
  • Your initial opinion post should be at least 10 sentences.
  • Debate and reply to at least 4 classmates' posts
  • Be the congressman.  Individually, read the forum and write a paragraph about what the public opinions are, which opinion seems to be more popular, and if public opinion will affect how you construct your proposal.

Part 4: Persuasive essay.

  • Choose a stance and write a 5 paragraph essay to convince your comitee members.
  • Your essay will include an introduction paragraph, three body paragraphs, and a conclusion paragraph. 
  • Must include a thesis and three components/reasons (one per paragraph) with supporting details.
  • Your group will all read each other's essays.

Part 5:  Construct your proposal

Your proposal should

  • Regulate the collection of human tissue samples
  • Determine property rights
  • Specify who recieves any royalties or benefits from commercialization of human tissue or genomes

Part 6:  The vote

  • Each group will present their proposal
  • The presentation should take 5-10 minutes
  • As a class, we will vote on the best proposal

Sources: 

Conclusion

Congratulations!  By completing this project you have brought order to a complex and controversial issue.  You have researched the strange story of the HeLa cell and how it changed the world.  You have weighed the importance of scientific research against individual rights to find where you stand.  You have demonstrated research and note-taking skills, argued your perspective, and compromised with others.  I hope you had fun doing it.

Credits

References

Reisching, J.  (n.d.) Cell culture (HeLa cells) (261) Cell culture (HeLa cells) - metaphase, telophase.jpg.  Retrived from Wikimedia Commons at https://commons.wikimedia.org/wiki/File:Cell_culture_(HeLa_cells)_(261_…

Emw. (2013) Henrietta Lacks historical marker; Clover, VA; 2013-07-14.jpg.  Retrieved from Wikimedia Commons at https://commons.wikimedia.org/wiki/File:Henrietta_Lacks_historical_mark…

Biography.com Editors. (n.d.) Henrietta Lacks biography.  Retrieved from Biography.com at http://www.biography.com/people/henrietta-lacks-21366671

Lacks Family. (n.d.) The Lacks Family.  Retrieved from www.lacksfamily.net

Parry, Wynne. (2013). Controversial 'HeLa' cells: Use restricted under new plan.  Retrieved from LiveScience at http://www.livescience.com/38728-hela-cells-restricted-new-nih-plan.html

Zielinski, S. (2010). Henrietta Lacks' 'immortal' cells.  Retrieved from Smithsonian at http://www.smithsonianmag.com/science-nature/henrietta-lacks-immortal-c…

Gross, T. (host) (2011, July 15). 'Henrietta Lacks': A donor's immortal legacy [Radio broadcast episode].  In T. Gross & D. Miller (Producers). Fresh Air.  Philadelphia:  WHYY-FM.

AccessScience Editors. (2014). Importance of HeLa cells. In AccessScience. McGraw-Hill Education, 2014. Retireved from http://www.accessscience.com/content/importance-of-hela-cells/BR0826141.

BigPicture. (2011) Quick guide to HeLa cells.  The Cell.  Retrieved from http://bigpictureeducation.com/quick-guide-hela-cells

Wagner, J. K. (2014) Property rights and the human body.  Retrieved from Genomics Law Report at http://www.genomicslawreport.com/index.php/2014/06/11/property-rights-a…

Josefson, D. (2000) Human tissue for sale: What are the costs? BMJ. Retrieved from NCBI at http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1071143/

Devine, C. (2010). Tissue rights and ownership: Is a cell line a research tool or a person? Retrieved from The Columbia Science and Technolgy Law Review at http://stlr.org/2010/03/09/tissue-rights-and-ownership-is-a-cell-line-a…

Chara, R. A. (2006) Body of research - Ownership and use of human tissue.  The New England Journal of Medicine. Retireved from http://www.nejm.org/doi/full/10.1056/NEJMp068192

Grady, D. (2010, February 1).  A lasting gift to medicine that wasn't really a gift.  The New York Times.  Retrieved from http://www.nytimes.com/2010/02/02/health/02seco.html?ref=books&_r=0