The Legacy of Henrietta Lacks

What kind of control should individuals have of tissue samples from their own bodies?

Henrietta Lacks is arguably one of the most famous individuals in this debate. In 1951, a scientist at Johns Hopkins Hospital in Baltimore created the first immortal cell line with a tissue sample taken from a young black women with cervical cancer. That young woman was Henrietta Lacks. The cells taken from her, called  HeLa cells, quickly became invaluable to medical research. Henrietta Lacks never knew that her doctor had taken a piece of her tumor without her consent, and she and her family received no benefits or recognition for her contribution to the medical science field. 25 years after her death, Mrs. Lacks' family found out what was  being done with the cells, and launched a campaign to get some of what they were owed financially.

A books was published in 2010 by Rebecca Skloot, The Immortal Life of Henrietta Lacks, that does an excellent job exploring the story. Part of the proceeds of her book went to set up the Henrietta Lacks Foundation whose mission is to provide financial assistance to individuals who have made important contributions to scientific research without personally benefiting from their contributions, particularly contributions made to research without their knowledge and consent.

Do we own our own tissues after they are removed from our body? If so, then it seems reasonable that we should expect to have some say in how they are used and have the right to demand payment when a profitable discovery derives from them. Or, if we can't treat tissues samples from our own body as property, what other rights do we have, and kinds of obligations do researchers have to tissue donors?

For more information, see:

Skloot, Rebecca. The Immortal Life of Henrietta Lacks. New York: Crown Publishers, 2010.

Troug, Robert D., Aaron S. Kellselheim, and Steven Joffe. "Paying Patients for Their Tissue: The Legacy of Henrietta Lacks. Science Magazine. 337(6090) 37-38. July 6, 2012. http://www.sciencemag.org/content/337/6090/37.full?sid=b30262f0-c4d4-44e9-a4e4-2515e9234841

Ziellinski, Sarah. "Henrietta Lacks' 'Immortal' Cells". Smithsonian.com. January 22, 2010. http://www.smithsonianmag.com/science-nature/Henrietta-Lacks-Immortal-Cells.html

Animal Welfare: When is Regulation Needed?

Back in February, NPR reported on an agreement reached by Gene Gregory, the president of the United Egg Producers, and Wayne Pacelle, the president of the U.S. Humane Society, to lobby for new rules for egg farmers which would require them to provide larger cages for egg-producing chickens, along with perches and nest-boxes. The compromise came after years of bitter argument about the practice of crowding chickens into wire cages.

Now, the compromise is under attack, not by egg farmers, but by America's hog and beef producers. The National Pork Producers Council and the National Cattlemen's Beef Association are lobbying against any kind of regulation because they fear that it might turn into a slippery slope. If Congress passes regulation that makes it mandatory for farmers to follow new laws for the housing of chickens, the next step might be new regulation that mandates the living conditions of hogs and cattle. 

That National Pork Producer's Council has called the egg legislation a "Federal Farm Takeover Bill" and has been lobbying Republican members of congress, saying that the new bill is likely to lead to higher prices for eggs.  And it looks as if organizations who oppose the bill are winning. The egg producers and the Humane Society had hoped to attach their proposal to the farm bill which is currently making its way through congress. The Senate has not brought up this proposal for a vote however. Its best chance, some analysts say, might be after elections are held in November. 

Meanwhile, one hopes that this partnership between United Egg Producers and the Humane Society will bear fruit, and even be emulated in other areas where the welfare of animals is under debate. 

For more information, check out NPR's article from June 11, "U.S. Pig and Cattle Producers try to Crush Egg Bill."

New Books to Check Out

CSEP Library has just gotten a large batch of news books in that are available to check out...too many to list, but here are some of the highlights.

Engineers of Revolutionary Russia: Iurii V. Lomonsov (1876-1952) and the Railways by Anthony Heywood

Hold Paramount: The Engineer's Responsibility to Society by P. Aarne Vesilind and Alastair S. Gunn. (2nd ed)

Patent Failure: How Judges, Bureaucrats, and Lawyers Put Innovators at Risk by James Bessen and Michael J. Meurer

The Oxford Handbook of Business Ethics by George G. Brenkert and Tom L. Beauchamp

We should be getting another batch in early July, so please be sure to check back for the new titles!

Informed Consent & Use of Information for Other Purposes

A recent article in Nature by Ericka  Check Hayden talks about some of the problems that can come up in the informed consent process when participants in research don't feel very informed by the process. In an age where data about individuals is getting gathered and used on am much larger basis,  participants in research and the researchers themselves are often not entirely clear about how data may be used in the future, or if this data will remain protected. With all this confusion, some people are less willing to participate in research than they used to be, and researchers often feel confused about how they should approach this issue.

So what should we do? The article discusses some better potential models for consent, including the potential for new technology that will allow participants to control and track how their data is used.

Let us know what you think! How can the informed consent process catch up to the reality of research today?

Boeing Scholars Academy Ethics Bowl - July 5th, 1:30-5 pm

On July 5^th, 100 high school students will be participating in the second annual Boeing Scholars Academy Ethics Bowl as part of the Boeing Scholars Academy summer program. During the afternoon, teams of students will discuss a series of two cases directly related to this summer’s theme, “local action, broader impact.” The ethics cases studies were developed based on ideas from a brainstorming session held with Boeing Scholars Academy students on June 19^th, and center around the issues of social media, the ethical gathering and use of data, and issues of public health and environmental sustainability.

In an ethics bowl competition, a moderator poses questions to teams of students based on cases they have read and discussed. A panel of judges then evaluates the answers based on the following criteria; intelligibility, focus on ethically relevant considerations, avoidance of ethical irrelevance, and deliberative thoughtfulness.  The Ethics Bowl competition was first started by Dr. Robert Ladenson at IIT in 1993, and has grown in popularity ever since, now encompassing the Intercollegiate Ethics Bowl in which over 132 teams of undergraduate students around the U.S. compete in, as well as the newly formed National High School Ethics Bowl which will be holding its first national competition in Chapel Hill in April of 2013.  

The Center for the Study of Ethics in the Professions has been working closely with Boeing Scholars Academy program staff to organize this event.  We have a number of distinguished judges who have volunteered to be a part of this event, including Ethics and Compliance Officers from a number of major Chicago-area companies, IIT faculty, and students from IIT’s Intercollegiate Ethics Bowl team. We look forward to an exciting and thought-provoking afternoon, and invite everyone to come and watch the fun!  The competition will be held in the E-1 building from 2:45-3:45 pm, and signs will be posted showing participants and visitors where to go. For more information, please email Kelly Laas at laas@iit.edu. 

Women in Science

The latest edition of Science Careers, focuses on women in science- namely how far we have come, and the places where we still have a ways to go. I was also interested in the review of  Breaking into the Lab: Engineering Progress for Women in Science, which I shall be ordering for the library shortly. 

Summer Hours

The CSEP Library will be open Monday-Friday, 9-5 during the summer session. As we are involved in a number of summer programs, please call or email if you would like to schedule a reference interview, though you can get access to the library by stepping into room 204 across the highway if the library is closed when you come by.