Final twist to tale of Henrietta Lacks, the woman whose cells helped the fight against cancer!

Scientists recant in ethics row over publishing DNA genome of research’s unwitting heroine

Henrietta Lacks

Henrietta Lacks, who died of cancer in 1951, but whose tumour cells have been an invaluable resource for medical researchers. Photograph: Courtesy of the Henrietta Lacks Foundation

The astonishing story of Henrietta Lacks, who died of cancer in 1951 but whose still living cells are now the basis for much medical research, has captivated America for the past two years – and there is no sign of the debate, or its controversies, abating.

As revealed in the bestselling 2011 book The Immortal Life of Henrietta Lacks, this is a tale of a poor black tobacco farmer who never consented to having her tissues taken but whose cancer cells have proved so important they have formed the foundation for work leading to two Nobel prizes.

Yet Lacks’s family never knew about it – even as the cells were used around the world in research, or when they themselves were asked for blood samples two decades later. The book described the indignity of the family’s ordeal even as giant corporations profited hugely from Lacks’s cells – known as HeLa in medical parlance. Her children, again without their knowledge, had their medical records studied and even published. It was a story of the complex intersection of medicine, race and profit that seemed to have a happy ending as the book, written by Rebecca Skloot, became a bestseller and Lacks’s contribution to medical science was recognised.

But now history seems to have repeated itself. A group of scientists at the European Molecular Biology Laboratory in Heidelberg recently published a paper in which they sequenced the entire genome of a HeLa cell – essentially putting Lacks’s DNA sequence up on the internet for all to see. Amazingly, they failed to alert anyone in the Lacks family about their intentions or ask their permission.

Skloot was outraged, arguing that scientists appeared to have learned little. “The publication of the HeLa genome without consent isn’t an example of a few researchers making a mistake. The whole system allowed it. Everyone involved followed standard practices. They presented their research at conferences and in a peer-reviewed journal. No one raised questions about consent,” she wrote in a column in the New York Times.

David Kroll, a science writer and board member of the Henrietta Lacks Foundation, was furious that Lacks and her family had again apparently fallen into a scientific ethics blind spot. “I was pretty appalled. I could not believe this was happening all over again.”

The impact was rapid. Though the scientists at EMBL had insisted that the genome could not be used to make any sensitive medical conclusions about Lacks or her living family members – such as whether they had a predisposition to certain diseases – one researcher told Skloot they had done precisely that by downloading the genome and provided proof of their deductions confidentially to Skloot. Eventually the EMBL revised its publication, removing full details of the genome, and apologised.

The incident has added an unexpected last chapter to what was already a remarkable story. Lacks died quickly, aged 31, after being diagnosed with cervical cancer. The cells taken from her have been used in experiments all over the world and even in space. HeLa cells have helped make hundred of millions of profits for companies all over the world and been used for medical breakthrough after breakthrough. They have been used to develop the polio vaccine and in vitro fertilisation and even cloning.

Yet, before Skloot’s book was published, her story was little known. Now, not only is Lacks honoured – she has had a school named after her – but her case is held up as a prime example of the abuse of medical ethics where getting consent from test subjects is now seen as a primary moral duty. “The scientific community can still be arrogant and have a disregard for people’s feelings,” Kroll said.

That seems to be particularly true of this latest incident involving the publication of the genome of the HeLa cells. As genetic technology and medicine becomes more common it is going to raise key issues of privacy. The human genome is becoming easier and cheaper to map in its entirety and the sort of breaches that just took place with the HeLa cell line are likely to become more frequent. That could open up many people to unscrupulous employers or health insurance companies trying to analyse DNA sequences for confidential information.

“It speaks very widely to genetic privacy,” Kroll said. After all, Kroll argued, if researchers were still blithe enough to publish a genome as well known as a HeLa cell, then they might be even less bothered by people whose identities are – now – less famous. “The whole Henrietta Lacks case has been a blessing in disguise. Often mistakes can lead to advances and correcting behaviour,” said Kroll.

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Got Apples?

Apples – This is Powerful

A few years ago a group of salesmen went to a regional sales convention in Chicago . They had assured their wives that they would be home in plenty of time for Friday night’s dinner. In their rush, with tickets and briefcases, one of these salesmen inadvertently kicked over a table which held a display of apples. Apples flew everywhere. Without stopping or looking back, they all managed to reach the plane in time for their nearly-missed boarding…

ALL BUT ONE!!! He paused, took a deep breath, got in touch with his feelings, and experienced a twinge of compassion for the girl whose apple stand had been overturned.

He told his buddies to go on without him, waved good-bye, told one of them to call his wife when they arrived at their home destination and explain his taking a later flight. Then he returned to the terminal where the apples were all over the terminal floor.

He was glad he did. The 16-year-old girl was totally blind! She was softly crying, tears running down her cheeks in frustration, and at the same time helplessly groping for her spilled produce as the crowd whirled about her; no one stopping and no one to care for her plight.

The salesman knelt on the floor with her, gathered up the apples, put them back on the table and helped organize her display. As he did this, he noticed that many of them had become battered and bruised; these he set aside in another basket.

When he had finished, he pulled out his wallet and said to the girl, “Here, please take this $40 for the damage we did. Are you okay?” She nodded through her tears. He continued on with, “I hope we didn’t spoil your day too badly.”

As the salesman started to walk away, the bewildered blind girl called out to him, “Mister….” He paused and turned to look back into those blind eyes. She continued, “Are you Jesus?”

He stopped in mid-stride … and he wondered. He gently went back and said, “No, I am nothing like Jesus – He is good, kind, caring, loving, and would never have bumped into your display in the first place.

“The girl gently nodded: “I only asked because I prayed for Jesus to help me gather the apples. He sent you to help me, so you are like Him – only He knows who will do His will. Thank you for hearing His call, Mister.”

Then slowly he made his way to catch the later flight with that question burning and bouncing about in his soul: “Are you Jesus?”

Do people mistake you for Jesus?

That’s our destiny, is it not? To be so much like Jesus that people cannot tell the difference as we live and interact with a world that is blind to His love, life and grace.

If we claim to know Him, we should live, walk and act as He would. Knowing Him is more than simply quoting scripture and going to church. It’s actually living the Word as life unfolds day to day .

You are the apple of His eye even though you, too, have been bruised by a fall. He stopped what He was doing and picked up you and me on a hill called Calvary and paid in full for our damaged fruit.

Please share this, {IF you feel led to do so}.

Sometimes we just take things for granted, when we really need to be sharing what we know….Thanks.  “Being happy doesn’t mean everything is perfect.  It means you’ve decided to see beyond the imperfections.”

The Little Things!

The ‘ L I TT L E ‘ Things~

As you might remember, the head of a company survived 9/11

Because his son started kindergarten.

Another fellow was alive because it was
His turn to bring donuts.

One woman was late because her
Alarm clock didn’t go off in time.

One was late because of being stuck on the NJ Turnpike
Because of an auto accident.

One of them
Missed his bus.

One spilled food on her clothes and had to take
Time to change.

One’s
Car wouldn’t start.

One couldn’t
Get a taxi.

The one that struck me was the man
Who put on a new pair of shoes that morning,
Took the various means to get to work
But before he got there, he developed
A blister on his foot.

He stopped at a drugstore to buy a Band-Aid.
That is why he is alive today..

Now when I am
Stuck in traffic ,
Miss an elevator,
Turn back to answer a ringing telephone …
All the little things that annoy me.
I think to myself,
This is exactly where

God wants me to be
At this very moment..

Next time your morning seems to be
Going wrong ,

You can’t seem to find the car keys,
You hit every traffic light,
Don’t get mad or frustrated;
It May be just that
God is at work watching over you.

May God continue to bless you
With all those annoying little things
And may you remember their possible purpose.

Pass this on to someone else, if you’d like.
There is NO LUCK attached.
If you delete this, it’s okay:
God’s Love Is Not Dependent On E-Mail!!


(that’s the cool part)