Who controls the information about your genes?

The Immortal Life of Henrietta Lacks, the Sequel by Rebecca Skloot

Last week, scientists sequenced the genome of cells taken without consent from a woman named Henrietta Lacks. She was a black tobacco farmer and mother of five, and though she died in 1951, her cells, code-named HeLa, live on. They were used to help develop our most important vaccines and cancer medications, in vitro fertilization, gene mapping, cloning. Now they may finally help create laws to protect her family’s privacy — and yours.

The family has been through a lot with HeLa: they didn’t learn of the cells until 20 years after Lacks’s death, when scientists began using her children in research without their knowledge. Later their medical records were released to the press and published without consent. Because I wrote a book about Henrietta Lacks and her family, my in-box exploded when news of the genome broke. People wanted to know: did scientists get the family’s permission to publish her genetic information? The answer is no.

Skloot's book, The Immortal Life of Henrietta Lacks, details the various ways science, in its press to go forward, did so with certain degree of ignorance and disregard for the people who were genetically connected to the most successful cell line in history. The HeLa line saved millions (among so many other things, it was used to develop the polio vaccine), but science never seems to be able to get it right when dealing with the family Henrietta Lacks left behind. Now they've stumbled yet again. At least the team did apologise when they heard of the family's reaction, and took down the data they'd made public, but of course that's like shutting the barn door after the horses have escaped, as it was downloaded and most likely deseminated.

In the United States there are laws that protect seemingly every bit of medical privacy, laws that weren't extant when Lacks lived and died. But laws related to research are still a bit murky. Can someone take tissue or samples from you, remove direct connexion to your name and then publish your genome or use your cells in research without your consent, patenting the result, reaping billions? Science is moving fast, and our legal and ethics system isn't necessarily moving fast enough. Even with consent, most people don't realise what they're signing; they don't understand the legalese or the medicalese, not because of stupidity, but because it's complex and they're untrained in it. So ethics would suggest that we protect those who don't have the knowledge to truly make informed consent by at the very least requiring it be said in simple terms, and, respecting the wishes of those who would rather not participate. Personally I think it's rather wrong to profit from a person's material without compensation or knowledge, unless expressly donated. I recognise the cells are doing nothing sitting in a tube without the scientific manipulation and development, but at the same time, the person or heirs should at least share in the ownership of the cells, which came from his or her body. Would that cripple scientific research? Probably not.

I found this interesting, listening to public radio on Sunday....

Alain de Botton on a School of Life for Atheists

Alain de Botton is a philosopher who likes the best of religion, but doesn’t believe in God. So he’s created “The School of Life,” a secular community in London. He explains why wisdom and ritual shouldn’t be reserved just for believers.

Saw this yesterday on the news. Unbelievable.

You know what else is unbelievable? The number of people on YouTube commenting on how her taxes on that lottery win more than paid for any public assistance she's been (and continues) to be given. That's not the point. Public assistance is for those who need it, period. It doesn't matter if you don't get your money from a job, what matters is that even after cash option and taxes she had $500,000 to her name, and that's not poor. I think she can pay for her groceries herself and let others who truly need it use the benefit as it was intended.

Oh, and let me just add that I think food assistance should be used for, well, groceries. I worked in a gas station for five years and heard so many complain that we didn't take food stamps. I understand that for some neighbourhoods, a convenience store really might be the only place to get bread and milk with limited transportation, but the vast majority of the complaints I heard came from people upset for having to spend money loading up on cokes and candy, and then there were those who put those back so they could afford their cigarettes. Not saying everyone does that, I'm just saying that is what I often saw.

Utter callousness and stupidity

Primary schoolchildren in tears after they are told they will be removed from families as part of Holocaust 'game'

A teacher decided to do a roleplaying exercise to teach her eleven-year-olds how it might have been for Jewish children during the Holocaust. Unfortunately, the kids didn't know it was a roleplay, for the teacher neither informed students or parents about the intended programme.

One girl said her classmates began crying when Mrs McGlynn told them she had a letter from the Scottish Executive saying nine children had to be separated from their classmates.

She told the shocked youngsters those who were born in January, February and March had lower IQs than other children, 'due to lack of sunlight in their mother's womb', and that they had to put yellow hats on and be sent to the library.

The mother added: 'When I asked why on earth they thought it was appropriate to deliver a role play situation to the children in this way, Mrs Stewart informed me that they didn't inform the children beforehand.

'This was because they wanted the children to experience an "accurate emotional response" to this scenario in order for it to be reflected in their story writing.

'Mrs Stewart then invited me to come up to the school and see the excellent work that had been produced as a result of the exercise.

'I declined and my position and opinion on the method used to extract emotive story writing from the children was cruel, barbaric, traumatic and totally, totally unethical.

'My daughter and indeed no child needs to feel the terror, fear, panic, segregation and horror that a child of the Holocaust experienced during one of the worst atrocities in history to be able to empathise with them in order to produce good story writing.'

Well said. It reminds me of the Jane Elliot's controversial 'blue-eyed/brown-eyed' exercise, which was used as an example of unethical use of human subjects in sociology class, along with the Milgram experiment. Ironically, had the teacher in the British case been a scientific researcher, her exercise would never had made it past an institutional review board (IRB) because it violates the first point of the Nuremberg Code--that informed consent of the subject must be obtained. The Nuremberg Code was, itself, set up as a response to Nazi human experimentation methods during the Holocaust to prevent exploitation and harm to the experimental subjects.

Interestingly, several commentators on the story mentioned that children today are coddled and that the children shouldn't have been so upset. But they are missing a crucial issue--trust. I don't think the parents are wrong to be upset. There's a difference between coddling a youngster and sheltering him or her from the realities of the world and betraying the trust that school is a 'safe place' in which to learn. I do not believe the teacher in this case thought out the emotional distress that this would produce coming from a trusted adult.

Interestingly, despite the ethical issues surrounding the Elliot and Milgram exercises, the majority of participants in each case looked back on them as positive experiences. Perhaps these children will as well. But considering the manipulation of emotions involved, I can't help but think that there are psychological explanations for the overwhelming support the subjects gave, perhaps a refusal to believe that anyone in a trusted position would abuse their power through manipulation. But in my opinion, that is what was done in all three of these cases.

A very sobering but thought-provoking article on medical ethics and disasters

Strained by Katrina, a Hospital Faced Deadly Choices

The smell of death was overpowering the moment a relief worker cracked open one of the hospital chapel’s wooden doors. Inside, more than a dozen bodies lay motionless on low cots and on the ground, shrouded in white sheets. Here, a wisp of gray hair peeked out. There, a knee was flung akimbo. A pallid hand reached across a blue gown.

Within days, the grisly tableau became the focus of an investigation into what happened when the floodwaters of Hurricane Katrina marooned Memorial Medical Center in Uptown New Orleans. The hurricane knocked out power and running water and sent the temperatures inside above 100 degrees. Still, investigators were surprised at the number of bodies in the makeshift morgue and were stunned when health care workers charged that a well-regarded doctor and two respected nurses had hastened the deaths of some patients by injecting them with lethal doses of drugs. Mortuary workers eventually carried 45 corpses from Memorial, more than from any comparable-size hospital in the drowned city.

At some point in the aftermath of Katrina, a decision was made at Memorial to put the patients with 'do not resuscitate' orders dead last in the evacuation. Contrary to most triage schemes, the healthiest were evacuated first, leaving the sickest to linger. Others were thought too big to move (a sobering thought for me, I might add, given my weight, that being fat could doom you). And quite a few patients were 'made comfortable' with injections of medicines whose combined effects made them calmly die. A doctor and two nurses were charged, but the case never got beyond a grand jury. The writer, however, has access to interviews and records that were not made public to those juries, and the story of Memorial, its conditions, the mentality of desperation, and the chilling decisions made is really quite compelling. It's a long article, but well worth a read.

But she did the right thing

Sometimes you can't just sit back and catalogue or classify...sometimes you have to take action. One librarian did--and lost her job over it.

California Librarian Fired for Reporting Man Viewing Child Porn

Lindsay Librarian Fired for Reporting Man Viewing Child Porn

The supervisor told her to make a note on the man’s library account and tell him to stop looking at the pictures. Biesterfeld felt that the authorities needed to be alerted, so she called the police anyway. When police did get involved, they found thousands of images of child pornography. 39-year-old Donnie Chrisler was arrested, and a day and a half later; Biesterfeld was out of a job.

There's a time when our desire to protect the privacy of our patrons has to submit to the greater good. And whilst that greater good is sometimes hard to define, I think most of us agree that protecting children from exploitation and possible abuse is more important that anyone's anonymity as a library patron surfing the net.

I believe that was my point

A few months ago, I expressed my dismay at the so-called 'Ashley Treatment' in which a young disabled girl, among other things, was given a hysterectomy.

Children's Hospital admits it broke state law with girl's surgery:
But 'miscommunication' to blame; facility argues it made right decision

At the time I felt that her rights were being violated, and that it was a step back to a time when developmentally disabled patients were routinely sterilised.

Now, apparently, it also violated the law of the state of Washington. They should have sought a court order, something the hospital ethics committee suggested but which was ignored because a lawyer had given the family a letter stating that it was not needed.

So there will be an intensive review of the case to find out where the communication broke down, what measures should be in place to ensure the rights of the disabled, etc. Which is all to the good, I think.

Companies in the wrong

Reed Elsevier, the publisher of many respectable scientific journals, and well known to librarians, has a little side business you may not know about. Through subsidiaries they sponsor arms fairs. We're not talking tiny gun shows, but huge events where people from all over the world, including countries with terrible human rights violations, come to buy weapons. Concerned? Read more at:

Reed Elsevier and the arms trade

Sign the petition requesting that Reed Elsevier stop organising the arms fairs. I'm number 1019 on the list.

In other news, Chiquita, best known for its bananas, has been fined $25 million for making payments to terrorist militias in Colombia supposedly to protect its employees. Despite being told over and over again that these payments were illegal, executives continued to okay the cheques (and eventually cash disbursements) up until 2004, when they sold off their interests in Colombia. For more on the story and some of the background of Chiquita, check out TruthDig's Chiquita’s Slipping Appeal. I know, it's a terribly liberal site. But the story has been covered by a variety of media, so feel free to Google the story elsewhere if you have an objection or are uncomfortable with their bias. Also, you can view Chiquita's statement online as well. In their favour, they voluntarily came to the Department of Justice with the information--although apparently not as soon as they should have. This fine is part of a plea agreement.