Biology - HELA Project

Medical ethics – How has our understanding of ethics in medicine changed as a result of Henrietta Lacks’ story? (You do not have to discuss all of these issues)

• Informed consent - Henrietta’s cells were taken without her knowledge and without her consent. Even if she had given permission she probably would not have understood the implications of her decision. 
• Privacy - Henrietta’s genetic information is now widely available. Her descendants share some of her genetic information which means their information is also available. Her name was originally kept private but has since been shared outside of the medical community. 
• Ownership of tissues - Millions of dollars are made every year on the cloning of Henrietta’s cells and the discoveries that have come from her cells. Who should own the tissues and genetic information that came from Henrietta’s cells? 

Informed Consent: 

• How has Henrietta’s story impacted informed consent laws in the United States?
• Do informed consent laws adequately protect people when it is difficult for doctors to understand the implications of their decisions or when it is impossible to predict the implications of the decisions being made? 

Privacy:

• How has our understanding of rights to privacy changed as a result of Henrietta’s story?
• What are the individual implications of having family members release their genetic information on websites such as 23andMe? 

Ownership of Tissues:

• Millions of dollars are made every year on the cloning of Henrietta’s cells and the discoveries that have come from her cells. This money would not have been made without the work and discoveries of the doctors and scientists. But the doctors and scientists would not have been able to make their discoveries or do their work without Henrietta’s cells. Who should own the tissues and genetic information that came from Henrietta’s cells?
• What would be a fair way to compensate people for the use of their cells, knowing that very few people’s cells will result in any profits for doctors/scientists?

If you have questions while you are researching, please drop by the library or email Ms. Li (sli@shschools.org).