We Need To Stop The Abuse Against Henrietta Lacks, Whose Body Continues To Be Violated In The Name Of Science

We Need To Stop The Abuse Against Henrietta Lacks, Whose Body Continues To Be Violated In The Name Of Science

The mother of modern medicine.

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Without a doubt, Henrietta Lacks is the most important figure in modern medicine. You may not have heard of her by name, but if you've heard of the polio vaccine, the human genome project, cloning, or in vitro fertilization, then you have already had a brief introduction.

Scientists refer to her as HeLa, and in 1951 she was a poor tobacco farmer and young mother of five who visited Johns Hopkins Hospital, one of the very few hospitals treating African Americans at the time, complaining of vaginal bleeding. Dr. Howard Jones discovered that Lacks had an aggressive tumor on her cervix and biopsied her cervical cells. The samples were sent to Dr. George Gey, who had been collecting cells from cervical cancer patients for years.

Lacks died within a year of her diagnosis, but her cells lived on in Dr. Gey's lab without her or her family's knowledge. Dr. Gey had discovered that Lacks' cells were unique. Where other cells died rather quickly after being removed from the body, Lacks' doubled every 20-24 hours.

Her cells would later be sold, and today there are over 17,000 patients using HeLa cells. Her cells are used to test toxins and cancer treatments among other things, and theoretically make billions of dollars a year. The crazy thing is, not a single penny goes to Lacks' estate or her family.

According to Johns Hopkins, there was no concent protocol in 1951 when Lacks' tissue and cells were taken, and so no ethical line was crossed in how they continued to use her cells, even after her death. They also claim that though her cells were sold, they do not own her cells because cells cannot be legally patented. Rather ownership of sold cells lies with the individuals/corporations that purchase her cells on the open market.

Johns Hopkins also denies profiting from the cells, though her cells have been reproduced billions of times in the name of research and have garnered hundreds of millions of dollars in research and development. While corporations have profited hugely from HeLa, the Lacks' family has received no compensation.

If that isn't sickening enough, in 2013, German scientists published a paper announcing they had sequenced the entire genome of a HeLa cell. And while HIPPA doesn't allow medical professionals to release personal or sensitive information about patients, even after they have died, these scientists were able to put Lack's DNA sequence on display without her consent.

As it usually goes, the scientists later removed full details of the Lacks genome as well as issued an apology to the Lacks family...after backlash. At the same time, the scientists as EMBL argued that the genome they sequenced could not be used to make any sensitive medical conclusions about Lacks or her living family members, whose DNA was partly on display as well.

Later that year, the National Insitute of Health announced that two members of the Lacks family would sit on the board that reviews applications for the HeLa genome data, the agreement, of course, did not include compensation.

Lacks' oldest son, Lawrence, who is now 85, and two grandsons are fighting to regain control of their mother, and grandmother's cells and legacy. Lawrence Lacks didn't know until years after his mothers' death that she was still living on in test tubes around the world (and in outer space.) He and members of his family feel violated, and rightfully so as his mother's body will continue to be abused in the name of science.

The abuse of black people in the name of science isn't new. We know about gynecologist J. Marion Sims and his surgeries of enslaved African women--without anesthesia, scientists feeding sulfuric acid to "negro prisoners" to test its effect, and the Tuskegee experiments. The troubling story of Henrietta Lacks is another to add to the pile, but what makes her different, is that it is allowed to happen in 2019---a "post-racial," but obviously not moral, society.

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The Potomac Urges Me To Keep Going

A simple story about how and why the Potomac River brings me emotional clarity.

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It's easy to take the simple things for granted. We tell ourselves that life is moving too fast to give them another thought. We are always thinking about what comes next. We can't appreciate what's directly in front of us because we are focused on what's in our future. Sometimes you need to snap back to present and just savor the fact that you are alive. That's what the Potomac River does for me.

I took the Potomac River for granted at one point. I rode by the river every day and never gave it a second glance. I was always distracted, never in the present. But that changed one day.

A tangle of thoughts was running rampant inside my head.

I have a lot of self-destructive tendencies. I find it's not that hard to convince yourself that life isn't worth living if nothing is there to put it in perspective.

My mind constantly conjures up different scenarios and follows them to their ultimate conclusion: anguish. I needed something to pull myself out of my mental quagmire.

All I had to do was turn my head and look. And I mean really look. Not a passing glance but rather a gaze of intent. That's when it hit me. It only lasted a minute or so but I made that moment feel like an eternity.

My distractions of the day, no matter how significant they seemed moments ago, faded away. A feeling of evanescence washed over me, almost as if the water itself had cleansed me.

I've developed a routine now. Whenever I get on the bus, I orient myself to get the best view of the river. If I'm going to Foggy Bottom, I'll sit on the right. If I'm going back to the Mount Vernon Campus, I'll sit on the left. I'll try to sit in a seat that allows me to prop my arm against the window, and rest my cheek against my palm.

I've observed the Potomac in its many displays.

I've observed it during a clear day when the sky is devoid of clouds, and the sun radiates a far-reaching glow upon the shimmering ripples below. I can't help but envy the gulls as they glide along the surface.

I've observed it during the rain when I have to wipe the fogged glass to get a better view. I squint through the gloom, watching the rain pummel the surface, and then the river rises along the bank as if in defiance of the harsh storm. As it fades from view, I let my eyes trace the water droplets trickling down the window.

I've observed it during snowfall when the sheets of white obscure my view to the point where I can only make out a faint outline.

I've observed it during twilight when the sky is ablaze with streaks of orange, yellow, and pink as the blue begins to fade to grey.

Last of all, I've observed it during the night, when the moon is swathed in a grey veil. The row of lights running along the edge of the bridge provides a faint gleam to the obsidian water below.

It's hard to tear away my eyes from the river now. It's become a place of solace. The moment it comes into view, I'll pause whatever I'm doing. I turn up the music and let my eyes drift across the waterfront. A smile always creeps across my face. I gain a renewed sense of life.

Even on my runs, I set aside time to take in the river. I'll run across the bridge toward Arlington and then walk back, giving myself time to look out over either side of the bridge. I don't feel in a rush for once. I just let the cool air brush against my face. Sometimes my eyes begin to water. Let's just say it's not always because of the wind.

I chase surreal moments. The kind of moments you can't possibly plan for or predict. Moments where you don't want to be anywhere else. The ones that ground your sense of being. They make life truly exceptional.

Though I crave these moments, they are hard to come by. You can't force them. Their very nature does not allow it. But when I'm near the river, these moments just seem to come naturally.

I remember biking around DC when I caught sight of the Potomac. Naturally, I couldn't resist trying to get a better view. I pulled up along the river bank, startling a lone gull before dismounting. I took a few steps until I reached the edge of the water. The sun shone brilliantly in the center of the horizon.

A beam of light stretched across the water toward me, almost like a pathway to the other side of the river. I felt an urge to walk forward. I let one-foot dangle over the water, lowering it slowly to reach the glittering water below. I debated briefly whether I could walk on water. Though it sounds ridiculous, anything felt possible. Snapping back to reality, I brought my foot back up and scanned the vast blue expanse before me.

Eventually, the wind began to buffet against my left cheek, as if directing me to look right. I turned my head. A couple was walking along the bike path. They paused beneath a tree for a moment and locked eyes. Smiling, the man leaned in and whispered something in the woman's ear. As she giggled, they began to kiss softly.

While I looked on with a smile of my own, I couldn't help but wonder if there was someone else out there in the world willing to share this moment with me.

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