|Henrietta Lacks and her husband David in 1945. Lacks Family Photo|
Henrietta and HeLa
HeLa cells have been in the news recently. The oldest, and most commonly used cell lines around the world have had their genome sequenced for a second time. This cell line has been valuable to the progress made in human medicine in the past 60 years. But there is an ethical issue that has only recently been addressed. The HeLa cell lines came from a human, who has living relatives. Although these cell are now disassociated from the body, they still contain the same genetic material that is found in the family left behind.
In 1951, a 31 year old African-American mother of five checked into the Johns Hopkins Hospital after feeling a lump in her lower abdomen and experiencing heavy bleeding. Her life was running short but her legacy would unwillingly live on. Her name was Henrietta Lacks, and she was diagnosed with cervical cancer. It was unusually aggressive cancer that doctors had taken a sample of and began culturing it as a free living cell line. However, they did not ask Henrietta for permission to take her cells for scientific research. As she approached the end of her life, she would die never knowing that her cells were going to live on in laboratories all around the globe as HeLa. It was not until the 1970s that her family would even know that a small part of Henrietta was still alive.
Restoration of HeLa to Henrietta
There is a photo available on Wikipedia's creative commons site that I have seen used in the recent media frenzy. It is the cover photo of this blog entry, where a sepia toned ragged photo of Henrietta and David are handsomely dressed for a photo. This remarkable photo of the young couple has been tattered, torn, and taped. I have seen this a lot with older photos, though they are precious to the family, but sometimes time damages those keepsakes. Photo restoration has been a hobby of mine since college. I usually do them for friends and family but this photo of Henrietta and her husband is so endearing I had to try my hand at restoring it. You can tell how happy and proud she is to be there taking that photo, dressed so nicely, and 9 years before her diagnosis. I am providing the restored photo here, but the resolution of the image made it hard to do the best possible job. If I had a better scan of the original I think that I could get it even nicer. If anyone knows the Lacks family, I would like to send them a copy of the restored image. At the bottom of this post is a video of the restoration process that I did. It is not instructional as it is a time laps video of me working. The ability to restore this image, for me, parallels the restoration of HeLa's humanity to Henrietta, the woman who did not know she would save so many lives.
|The restored photo of Henrietta and David Lacks|
The importance of Henrietta's contribution to science is vast. With tens of thousands of research articles using the cells for scientific research, her cells may be the best understood example of human biology. Her family on the other hand were unable to stop or conceal anything about themselves. Henrietta had become public domain. Any scientist could get her, do what ever they wanted to her, and not have to conceal her identity or that of her kin. This was a gross ethical oversight which only came to light long after Henrietta's death. In addition, her family was left without any compensation for the vast commercial gains made off of Henrietta's cells.
Although progress has been made in patients rights and consent in scientific research, HeLa still is treated more as a tool then as human. The recent Nature article publishing the HeLa genome did not consult the Lacks family. This means that genetic information about Henrietta was publicly available and inferences could be made about her family without their consent. I think that open access is important in science, but anonymity of a patient (involuntary as she may have been) is important too. The genome of the HeLa cells is a valuable resource to researchers but consideration to the family still needs to be maintained.
Recently the family was invited to meet with Francis Collins, the director of the US National Institute of Health, so they could discuss how to handle this new information about Henrietta. An interesting result of this meeting is that the Lacks family will now be part of the oversight committee that will evaluate proposals to use the genome. The publicly available version of the genome was removed and access is granted only to researchers whom can justify its use. This is a great benefit to the family, now they have some control of how Henrietta's cells (genomes) will be used. The ethical implications of patient samples and information is an important issue in today's society. We as scientists can gather more information about a person then ever before. But how we use, distribute, and protect the individuals rights are important in considering the future of medicine. If only Henrietta could have known how she would live on, how her family would be impacted by her life, perhaps things could have been different.
Photo restoration video
For more information on Henrietta's life and her cells:
- The book "The immoral life of Henrietta Lacks" by Rebecca Sckloot is a great read. Rebecca interviews the family and provides a perspective of the historical, ethical, and emotional aspects to Henrietta and her family.
- The Radio Lab podcast "Famous Tumors" from May, 2010 is a great listen. Rebecca Sckloot leads us through an auditory journey with the HeLa cells, in addition to other great tumor stories that Robert Krulwich and Jad Abumrad walk us through.
- NPR's Michaeleen Doucleff wrote a nice synopsis titled "Decades After Henrietta Lacks' Death, Family Gets A Say On Her Cells" This is where I first saw the picture of Henrietta and David.
- Nature had a news article related to the story by Martin Bobrow "Balancing privacy with public benefit" that points out some very interesting aspects to the debate.
- Nature also had an editorial "Blood Ties"
With such a low resolution photo it was hard to restore more without losing overall quality. Her eye and nose still do not look right to me so I'm going to work on it some more. But I hope that someone might be able to track down a higher resolution file for me to use.
Her family did not receive compensation for the profits companies made off of her cells. There is a foundation (http://henriettalacksfoundation.org) that is set up to help the Lacks family as well as those whom are in a similar situation.