>> THE FAMILY OF HENRIETTA LACKS IS SETTLING A LAWSUIT WITH A BIOTECH COMPANY THAT USED HERSELF WITHOUT CONSENT.

INACTIVITY ONE, DOCTORS TOOK THE BLACK WOMAN'S SELL BEFORE SHE DIED FROM CANCER.

THOSE CELLS KEPT LIVING, AND SCIENTISTS BEGAN REPRODUCING THEM.

HER CELLS SPARK A SCIENTIFIC REVOLUTION AND A MULTIBILLION DOLLAR INDUSTRY.

THAT STORY IS DOCUMENTED IN THE 2010 BEST-SELLING BOOK "THE IMMORTAL LIFE OF HENRIETTA LACKS" WHICH A FEW YEARS LATER BECAME A MOVIE STARRING OPRAH WINFREY.

IN 2011 -- THAT I'M AT THE BOOKS AUTHOR, REBECCA -- HE ASKED HER WHY LACKS'S FAMILY DID NOT FIND OUT UNTIL THE 70s THAT HER MOTHER CELLS WERE STILL ALIVE?

>> IT WAS A STANDARD PRACTICE TO TAKE CELLS FROM PEOPLE WITHOUT THEIR KNOWLEDGE AND GROW THEM , IN SOME WAY IT STILL IS TODAY, OFTEN HAPPENS, AS LONG AS YOUR IDENTITY IS REMOVED FROM IT, OR IF IT WAS TAKEN FOR SOME OTHER PURPOSE BESIDES RESEARCH, IT CAN BE USED WITHOUT PEOPLE KNOWING.

THAT WAS REALLY STANDARD IN THE 70s.

THE REASON THE FAMILY FOUND OUT WAS BECAUSE SCIENTISTS DECIDED THEY WANTED TO DO RESEARCH ON HER KIDS IN ORDER TO LEARN MORE ABOUT THE CELLS.

SO HER HUSBAND, WHO HAD A THIRD GRADE EDUCATION, DID NOT KNOW WHAT A CELL WAS, THAT THIS PHONE CALL ONE DAY.

THE WAY HE UNDERSTOOD IT WAS, ESSENTIALLY, WE HAVE GOT YOUR WAY, SHE IS ALIVE IN A LABORATORY.

WE ARE DOING RESEARCH ON HER FOR THE LAST 25 YEARS, AND NOW WE HAVE IT AT YOUR KIDS TO SEE IF THEY HAVE CANCER.

THAT IS NOT WHAT THE SCIENTISTS SAID AT ALL, BUT HE DID NOT HAVE ANY REFERENCE POINT, HE THOUGHT MAYBE THEY HAD HER IN LIKE A PRISON CELL, THAT WAS THE ONLY KIND OF CELL HE HAD HEARD OF.

SO HER FAMILY GOT SUCKED INTO THIS WORLD OF RESEARCH THEY DID NOT UNDERSTAND, AND SOON FOUND THAT THE PEOPLE WERE BUYING AND SELLING THE CELLS.

THEIR RESPONSE TO THAT WAS, IT OUR MOTHER CELLS WERE SO IMPORTANT TO MEDICINE, WHY CAN'T WE AFFORD TO GO TO THE DOCTOR?

IF PEOPLE ARE BUYING AND SELLING THEM, WHERE IS OUR CUT?

>> IN THE BOOK, YOU POINT OUT THEY ARE JUSTIFIABLY PROUD OF ALL THE GOOD THAT HAS COME FROM THE USE OF THEIR MOTHER'S CELLS, YET THEY FEEL THAT SOMEBODY KIND OF BAMBOOZLED THEM.

IT HAS TO DO WITH, IN PART, BECAUSE THEY ARE AFRICAN-AMERICAN TO GIVE US THE CONTEXT.

THAT THERE IS A LONG HISTORY OF BLACK PEOPLE BEING USED IN RESEARCH WITHOUT CONSENT.

THIS DATES BACK TO THE SLAVERY ERA, BUT ALSO IN THE 70s, WHEN THEY HEARD ABOUT THESE CELLS, THE NEWS HAD JUST HIT OF THE TUSKEGEE SYPHILIS STUDY, WHERE HUNDREDS OF BLACK MEN WITH SYPHILIS WERE STUDIED TO SEE HOW SYPHILIS KILLED YOU.

THEY WERE NEVER OFFERED TREATMENT.

THERE IS A LOT OF MISTRUST IN THE AFRICAN-AMERICA N COMMUNITY BECAUSE OF THIS HISTORY.

THEY WERE ALSO DEALING WITH -- THE COLORED WARD , AND HER EXPERIENCE IN THE HOSPITAL WAS VERY DIFFERENT BECAUSE SHE WAS BLACK.

SO THERE WAS A LOT OF MISTRUST, A LOT OF ANGER, AND A LOT OF FEAR.

THEY THOUGHT, MAYBE DID THEY GIVE HER CANCER IN ORDER TO GROW THESE CELLS?

OR MAYBE THEY CHOSE NOT TO TREAT HER.

THEY ALSO WORRIED ABOUT WHAT WOULD BE DONE TO THEM.

THERE WAS A LOT OF FEAR, A LOT OF ANGER, A LOT OF MISTRUST.

IT JUST KEPT GOING.

MAC I ALSO WANT TO POINT OUT JUST THE HUMAN REACTION, THAT, MY GOSH, DID THEY SAY PART OF OUR MOTHER IS STILL ALIVE?

WHY DIDN'T WE KNOW?

WHAT IS BEING DONE TO HER?

IS SHE BEING ABUSED?

IS SHE BEING BLASTED INTO SPACE AND SO FORTH?

THEY INITIALLY DID NOT WANT TO TALK TO YOU.

HOW DID YOU CONVINCE THEM TO TRUST YOU?

>> IT TOOK ME ABOUT A YEAR AND A HALF TO CONVINCE THEM TO TRUST ME.

A LOT OF IT WAS SHARING INFORMATION WITH THEM.

BY THE TIME I CAME ALONG, I DID NOT REALIZE, BUT I WAS ONE IN A LONG LINE OF PEOPLE WHO HAD COME TO THEM ESSENTIALLY WANTING SOMETHING FROM THEM HAVING TO DO WITH THESE CELLS, PARTICULARLY A TRAIN OF WHITE PEOPLE.

IT NEVER WORKED OUT FOR THEM.

STILL, NO ONE HAD EXPLAINED TO THEM WHAT A CELL WAS, AND IT WAS CLEAR THEY WANTED TO KNOW.

I SHARED INFORMATION FROM THEM.

I ALSO JUST DID NOT GO AWAY, SO AT A CERTAIN POINT, I THINK THEY DECIDED THEY WANTED TO GO AHEAD AND TALK TO ME.

EVEN AFTER THEY DID, THEY WOULD PERIODICALLY GET SUSPICIOUS AND SAY, MAYBE HOPKINS SENT YOU TO STEAL OURSELVES.

>> JOHNS HOPKINS, THE HOSPITAL SHE WENT TO IN THE FIRST PLACE.

>> RIGHT.

OUT OF CONTEXT, THAT SOUNDS A LITTLE CRAZY, BUT BY THE TIME I LEARNED ALL THE THINGS THAT HAD HAPPENED, HE WILL TRY TO STEAL THEIR MOTHER'S MEDICAL HISTORY, BECAUSE THEY THOUGHT THERE WAS MONEY IN IT.

THE STORY WAS TOO AMAZING TO BELIEVE WHAT HAD HAPPENED TO THEM.

>> IN THE FIRST INSTANCE, WAS IT WRONG FOR DOCTORS TO HAVE TAKEN THAT DIME -SIZED PIECE OF TISSUE?

>> IN THE STORY OF THE LACKS FAMILY AND THE THINGS THAT HAVE HAPPENED TO THEM, THAT WAS THE LEAST ETHICALLY COVERED GATED MOMENT OF THE STORY.

ABSOLUTELY STANDARD PRACTICE, WAS HAPPENING TO ANYONE WHO WENT TO THE HOSPITAL.

THAT WOULD HAVE HAPPENED TO A WHITE WOMAN?

>> YES, PARTICULARLY IF SHE WERE POOR.

THAT IS ONE OF THE THINGS ABOUT THE STORY, IT IS VERY MUCH ABOUT BOTH RACE AND CLASS.

A LOT OF RESEARCH WAS DONE IN THE PUBLIC WARDS.

THOSE ARE HOSPITALS THAT TREATED PEOPLE FOR FREE, WHO COULD NOT GET TREATMENT ELSEWHERE, MOSTLY BLACK PEOPLE AND POOR PEOPLE.

BUT EVEN IF YOU HAD MONEY, IN CERTAIN HOSPITALS, YOU WOULD HAVE HAD YOURSELF TAKEN.

>> YOU SAID THAT WAS THE LEAST ADVOCATED PART, WHAT WAS MORE COMPLEX?

>> MORE COLLOCATED WAS GOING BACK TO HER FAMILY, AND DOING RESEARCH ON THEM.

THAT HAPPENED IN THE 70s, AT A TIME WHEN -- AND IF IT IS, WE DID NOT EVEN HAVE THE TERM INFORMED CONSENT, THAT IDEA DID NOT EXIST.

BY THE 70s, IT DID.

GOING BACK TO HER FAMILY, USING THEM IN RESEARCH WITHOUT EXPENDING WHAT WAS GOING ON, THAT WAS A DIFFERENT STORY.

THEIR MEDICAL RECORDS WERE RELEASED TO THE PRESS AND PUBLISHED, WHICH WAS NOT STANDARD PROCEDURE.

>> LET'S FOCUS ON THE MEDICAL RECORDS.

SHE HAD SYPHILIS AND GONORRHEA , SO THAT WAS EMBARRASSING TO THE FAMILY.

>> YES.

>> IS THIS STILL HAPPENING TODAY?

WHERE TISSUES ARE TAKEN , IF I GO IN FOR A BIOPSY OR ANYTHING AND IT COMES UP NEGATIVE, WHO KNOWS WHAT HAPPENED TO THAT TISSUE?

IS THAT RIGHT?

>> TO A DEGREE, YES.

THERE ARE CERTAIN LAWS IN PLACE, NOW.

IF YOU GOING TO THE HOSPITAL, THEY CANNOT TAKE SAMPLES FROM YOU JUST FOR RESEARCH WITHOUT YOUR PERMISSION, ESPECIALLY IF YOUR IDENTITY IS ATTACHED.

BUT IF YOU GO IN FOR SELLING IS LIKE A BIOPSY OR BLOOD TEST, AND YOUR NAME IS REMOVED FROM THEM, AND THE TISSUES WOULD JUST BE DISCARDED OTHERWISE, THOSE CAN BE SAVED AND USED FOR RESEARCH WITHOUT CONSENT.

THERE IS ALSO NO LAW REQUIRING DISCLOSURE THAT ANYONE MIGHT MAKE MONEY OFF OF THOSE.

THE LACK EVEN THE PEOPLE COULD MAKE MONEY OFF THEM?

>> YES, THERE HAVE BEEN SEVERAL CASES UP UNTIL RECENTLY OF PEOPLE FINDING OUT YEARS AFTER THE FACT THAT THE SAMPLES WERE STORED AND USED IN RESEARCH.

I HAVE TALKED TO THOUSANDS OF PEOPLE ABOUT THIS.

TONIGHT GIVE ME AN EXAMPLE OF SOMEBODY WHO HAS CONTACTED YOU ABOUT THIS.

>> JUST THE DAY BEFORE YESTERDAY, A WOMAN REACHED OUT TO ME, HER SON HAD CYSTIC FIBROSIS AND DIED MANY YEARS AGO, IN THE 80s.

SHE FOUND OUT LONG AFTER HE DIED THAT HIS CELLS WERE STILL ALIVE, AND THEY WERE PART OF A VERY IMPORTANT PRODUCT.

SHE HAD THIS INCREDIBLY EMOTIONAL REACTION.

MY SON CELLS ARE STILL ALIVE AND SHE WAS RELIEVED, LIKE THE BLACK FAMILIES, THAT THEY WERE USING THE CELLS FOR RESEARCH, BUT WANT TO HEAR FROM PEOPLE AGAIN AND AGAIN IS THAT WE KNOW RESEARCH IS IMPORTANT, EVERYBODY WANTS RESEARCH TO HAPPEN, THIS IS WHERE DRUGS AND VACCINES COME FROM, BUT THEY WANT TO KNOW.

MOST PEOPLE WOULD SAY YES, TAKE MY CELLS, I'M NOT USING THEM.

>> THEY WANT TRANSPARENCY AND HONESTY.

>> EXACTLY.

BECAUSE WHEN YOU FIND OUT AFTER THE FACT, ESPECIALLY WHEN MONEY IS INVOLVED, PEOPLE START TO QUESTION WHAT ELSE ARE YOU DOING.

IT HARMS TRUST.

SO I THINK IT OFTEN COMES DOWN TO THAT, JUST WANTING DISCLOSURE OF WHAT IS GOING ON.

>> AND HENRIETTA LACKS ' CELLS HAVE BEEN USED TO DEVELOP THE