>>> HELLO AND THANK YOU FOR JOINING US ON CHICAGO TONIGHT: BLACK VOICES.

I'M BRANDIS FRIEDMAN.

ON THE SHOW TONIGHT, THE LACK OF DIVERSITY IN CLINICAL TRIALS AND EFFORTS TO CHANGE THAT.

>>> AND THE FAMILY OF HENRIETTA LACK REACHES A SETTLEMENT OVER THE USE OF HER CELLS WITHOUT PERMISSION.

-- CELEBRATE 94 YEARS, A LOOK AT WHAT TO EXPECT THIS YEAR.

>>> AND MEET FUTURE STORYTELLERS CHANGING THE NARRATIVES ABOUT VIOLENCE IN THEIR COMMUNITY.

ALL THAT COMING UP, BUT OUR FIRST STORY TONIGHT, THE PUSH TO DIVERSIFY CLINICAL TRIALS, RIGHT AFTER THIS.

>> CHICAGO TONIGHT: BLACK VOICES IS MADE POSSIBLE IN PART BY FIFTH THIRD BANK, AND BY THE SUPPORT OF THESE DONORS.

>>> CLINICAL TRIALS ARE THE WAY PHARMACEUTICAL COMPANIES AND OTHER HEALTHCARE RESEARCHERS DETERMINE WHETHER A NEW DRUG OR TREATMENT IS A.

BUT ONLY ABOUT 5% OF PEOPLE IN THE UNITED STATES PARTICIPATE IN CLINICAL TRIALS, AND ALMOST THREE QUARTERS OF THOSE PARTICIPANTS ARE WHITE.

THERE ARE SEVERAL REASONS FOR THAT LACK OF DIVERSITY AMONG TRIAL PARTICIPANTS, BUT IT CAN HAVE LIFE AND DEATH CONSEQUENCES FOR PEOPLE OF COLOR.

JOINING US NOW TO TELL US MORE ARE DR. JUKKA STEINBERG, A RESIDENT IN UPSTART AND GYNECOLOGY AT NORTHWESTERN UNIVERSITY SCHOOL OF MEDICINE -- FORESIGHT, FOUNDER OF THE LAZARUS CANCER FOUNDATION, WHICH WORKS TO IMPROVE CANCER OUTCOME FOR PATIENT BY PROVIDING GREATER ACCESS TO CLINICAL TRIALS, AND KENDALL WHITLOCK, HEAD OF DIGITAL OPTIMIZATION REAL-WORLD EVIDENCE CLINICAL TRIALS.

THANKS TO THE THREE OF YOU FOR JOINING US.

KENDALL WHITLOCK, I WANT TO START WITH YOU.

LAST YEAR, WALGREENS ANNOUNCED IT WAS ENTERING THE CLINICAL TRIAL BUSINESS IN A MOVE THAT COULD COMPLETELY DISRUPT THE CURRENT BUSINESS MODEL HOW CLINICAL TRIALS ARE DONE.

WHAT ARE THE BIGGEST PROBLEMS YOU SEE IN THE WAY CLINICAL TRIALS ARE CURRENTLY CONDUCTED?

AT LEAST WITH THIS LACK OF DIVERSITY AND PARTICIPATION?

>> THANK YOU SO MUCH FOR THE QUESTION AND THE OPPORTUNITY TO JOIN YOU THIS EVENING.

I THINK ONE OF THE BIGGEST FACTORS IS THAT TRADITIONAL CLINICAL TRIALS FROM THE SPONSOR PERSPECTIVE MAY HISTORICALLY GO BACK TO THE SAME LOCATIONS AND INVESTIGATORS AND SITES THAT HAVE HISTORICALLY BEEN USED SUCCESSFULLY IN THEIR TRIAL RECRUITMENT EFFORTS.

BUT WHEN THEY START TO UNPACK THE RECRUITMENT EFFORTS AND LOOK AT WHETHER OR NOT THERE IS DIVERSITY IN THE POPULATION OF PATIENTS WHO WERE RECRUITED, IT PAINTS ANOTHER PICTURE.

SO, BY RETURNING TO THE SAME SITES, THEY GET THE SAME ALLOTMENT OF THOSE WHO ARE GEOGRAPHICALLY PROXIMATE TO THEIR OWN LOCATION .

DIVERSIFYING CLINICAL TRIALS COMES THROUGH A VARIETY OF CHANNELS, ONE OF THEM IS THE USE OF DIGITAL TECHNOLOGY.

DURING THE COVID-19 PANDEMIC, WE SAW THE USE OF TELEMEDICINE, FOR EXAMPLE, THE SHIPMENT OF INVESTIGATIONAL MEDICAL PRODUCTS TO PATIENTS AT HOME, AND PATIENTS ELEVATING EXPECTATIONS THAT THEY WOULD HAVE OPTIONS IN THE CONVENIENCE AND ACCESS THEY WOULD HAVE TO ACCESS CARE, INCLUDING CLINICAL RESEARCH.

I WILL PAUSE BECAUSE I KNOW OUR TIME IS LIMITED.

>> LOST TO TALK ABOUT.

I KNOW ALL OF YOU CAN GIVE A 30 MINUTE PRESENTATION.

KENDALL, I WANT TO COME BACK TO YOU, BECAUSE OF THE NOTORIOUS EXPERIENCE EXPERIMENTS, WE ARE TALKING ABOUT HENRIETTA LACKS LATER IN THE SHOW, OFTEN CITED AS THE REASON WHY THE BLACK COMMUNITY DOES NOT TRUST THE MEDICAL COMMUNITY, AND IS RELUCTANT TO PARTICIPATE IN CLINICAL TRIALS.

DOES THAT TRESS WAY REMAIN A FACTOR?

WHAT OTHER ISSUES PREVENT PEOPLE OF COLOR AND BLACK PEOPLE IN PARTICULAR FROM GETTING INVOLVED?

>> I THINK THAT STORY OF TUSKEGEE IS ONE OF SEVERAL IN THE BARRIERS TO BLACK PARTICIPATION AND CLINICAL TRIALS.

YES THERE WAS GUIDANCE FOR FDA LAST YEAR, BUT WE KNOW THERE ARE 350 YEARS OF ATROCITIES ILLUSTRATED IN MEDICAL APARTHEID BY HARRIET WASHINGTON MANY YEARS AGO, THAT ILLUSTRATED THIS ISSUE IS NOT ONLY PERVASIVE IN AFRICAN-AMERICAN COMMUNITIES, BUT IN BLACK AND BROWN COMMUNITIES IN THE U.S. AS WELL AS GLOBALLY.

THIS DID NOT ONLY HAPPEN TO ONE SEGMENT OF SOCIETY, IT HAPPENED WORLDWIDE FOR HUNDREDS OF YEARS.

EVEN IN OB/GYN, WE HAVE STATUTES IN THIS COUNTRY OF MARION, CELEBRATED AS THE FATHER OF GYNECOLOGY, YET THESE EXPERIMENTS WERE DONE WITHOUT ANESTHESIA ON SLAVES.

SO SOME OF THOSE STORIES THAT WILL AFFECT GIVING AT CHRISTMAS DINNER TABLES, PASSED DOWN GENERATION AFTER GENERATION.

IF ALL THE PEOPLE KNOW IS THE NEGATIVES OF THE HISTORIC PAST, THEY MAY NOT BE OPEN TO LEARNING WHAT THERE IS IN PLACE IN TERMS OF CONTROL AND PROTECTIONS FOR PATIENTS AND PARTICIPANTS IN CLINICAL TRIALS.

>> DR. STEINBERG, IS BIAS AMONG THE ACTUAL RESEARCHERS, CONSCIOUS OR NOT, DOES THAT FACTOR INTO HAVING A CLINICAL TRIAL FULL OF PARTICIPANTS WHO ARE MOSTLY WHITE?

>> I THINK IT CERTAINLY FACTORS INTO THE HOMOGENEITY AMONG CLINICAL TRIAL PARTICIPANTS.

WE KNOW RIGHT NOW THAT PART OF THE PROBLEM THAT CAUSES THE LACK OF DIVERSITY IN CLINICAL TRIALS IS THE LACK OF DIVERSITY AMONG RESEARCHERS.

WE NEED TO PROMOTE AND ENCOURAGE AND SUPPORT DIVERSE RESEARCHERS AND EQUIP RESEARCHERS WITH THE TOOLS AND CULTURAL COMPETENCY TO RECRUIT DIVERSE PARTICIPANTS AND MAINTAIN THEIR PARTICIPATION THROUGHOUT CLINICAL TRIALS.

BIAS TRAINING, DIVERSITY EQUITY INCLUSION AND BELONGING TRAINING OUR FIRST STEPS, BUT EFFORTS NEED TO BE MADE IN EVERY ASPECT OF THE RESEARCH INFRASTRUCTURE TO REDUCE BIAS AND ENCOURAGE THE PARTICIPATION OF DIVERSE PARTICIPANTS.

>> YOUR FOUNDATION AIMS TO INCREASE ACCESS AND DIVERSITY IN CANCER CLINICAL TRIALS.

HOW DID YOU BECOME AWARE OF THE ISSUE THAT ACCESS IN CLINICAL TRIALS WAS A PROBLEM?

>> I STARTED LAZARUS 17 YEARS AGO, BASED ON A FAMILY SITUATION WITH PANCREATIC CANCER.

I IMMEDIATELY BECAME FAMILIAR WITH THE BARRIERS TO CLINICAL TRIAL PARTICIPATION.

FOR US, MY FAMILY PERSONALLY, IT WAS KNOWLEDGE.

WE KNEW NOTHING ABOUT TRIALS UNTIL I STARTED LOOKING INTO IT.

AND WHEN I GOT MY BROTHER-IN-LAW INVOLVED IN A TRIAL, I GOT TO REACH INTO MY POCKET EVERY WEEK TO GET HIM WHERE HE NEEDED TO GO.

THOSE TWO THINGS MADE A BIG IMPRESSION ON ME, BECAUSE I HAD THE TIME TO BE ABLE TO IDENTIFY TRIAL OPPORTUNITIES FOR MY BROTHER-IN-LAW.

AND FORTUNATELY, MY FAMILY WAS IN A FINANCIAL POSITION TO SUPPORT HIM THROUGH THAT PROCESS.

THAT SEEMED KIND OF MORALLY AND FUNDAMENTALLY WRONG TO ME THAT HERE, MIKE 'S FAMILY GOT TO BENEFIT, BECAUSE HE WAS IN THAT SITUATION.

WHAT DO OTHERS DO, WHO ARE NOT IN THAT SITUATION?

SO, THAT WAS THE BASIS BEHIND LAZARUS.

AND AS WE STARTED TO HELP PATIENTS IDENTIFY TRIALS AND PROVIDE FINANCIAL ASSISTANCE TO THEM, TO COVER THE TRAVEL EXPENSE SO THEY COULD ACTUALLY GET WHERE THEY NEED TO BE AND OUR NETWORK STARTED TO GROW, WE HAD PRINCIPAL INVESTIGATORS AND CLINICAL RESEARCH COORDINATORS AND SOCIAL WORKERS CALLING US TO SAY, HEY, WE REALLY NEED YOU TO HELP US FIX THIS DISCONNECT AROUND OUR COMMUNITIES OF COLOR AND THEIR LEVEL OF PARTICIPATION IN CLINICAL TRIALS.

SO, WE TURNED OUR FOCUS TO THAT IN 2012, AND REALLY STARTED TRYING TO UNDERSTAND THE OTHER BARRIERS , PARAMETERS, ISSUES, AND SOCIAL DETERMINANTS OF HEALTH, REALLY GET A GRIP ON THE ENTIRE PICTURE SO THAT WE COULD DEVELOP A PLACE-BASED AND CULTURALLY APPROPRIATE PROGRAM TO INCREASE ESPECIALLY AFRICAN-AMERICAN BLACK PARTICIPATION.

BACK AND THAT LACK OF DIVERSITY, DR. STEINBERG, AND CLINICAL TRIALS CAN LEAD TO NEGATIVE HEALTH CONSEQUENCES DOWN THE LINE.

>> YEAH, I THINK ONE EXAMPLE THAT REALLY SUMMARIZES EXACTLY WHAT YOU'RE TALKING ABOUT, THE LACK OF CLINICAL TRIAL DIVERSITY DIRECTLY IMPACT HEALTH OUTCOMES WAS DEMONSTRATED IN THE RESEARCH OF DR. KENNY DOLL.

SHE INVESTIGATED UTERINE CANCER AND ENDOMETRIAL CANCER.

THE STANDARD TOOL FOR DIAGNOSING ENDOMETRIAL CANCER WAS DEVELOPED AND RESEARCHED DONE PREDOMINANTLY WITH WHITE PARTICIPANTS.

SHE IDENTIFIED THAT THAT GOLD STANDARD, WHICH IS NOW USED ACROSS THE UNITED STATES, IS MUCH LESS SUCCESSFUL AND MUCH LESS ACCURATE IN BLACK WOMEN.

WE KNOW THAT BLACK WOMEN ARE THREE TIMES MORE LIKELY TO DIE OF ENDOMETRIAL CANCER THAN WHITE WOMEN.

THIS DISPARITY HAS MANY FACTORS, BUT ONE CONTROLLING FACTOR IS THAT OUR TOOLS DEVELOPED THROUGH THIS RESEARCH DID NOT INCLUDE DIVERSITY AND DID NOT ACCOUNT FOR THEIR HEALTH.

THAT SEEMS LIKE A GOOD, OBVIOUS PLACE TO START.

DENA, WHAT ASSISTANCE DOES YOUR FOUNDATION PROVIDE FOR PATIENTS WHO WOULD LIKE TO PARTICIPATE IN CLINICAL TRIALS?

>> WE HAVE PATIENTS NAVIGATE THROUGH THE CLINICAL TRIAL OPTIONS TO IDENTIFY TRIALS THEY COULD POTENTIALLY QUALIFY FOR.

AND IF THEY NEED HELP WITH THE OUT-OF-POCKET EXPENSES, WE DO COVER THE TRAVEL EXPENSES FOR THE PATIENT AND TRAVEL COMPANIONS, SO THEY CAN GET WHERE THEY NEED TO BE WHEN THEY NEED TO BE THERE.

WE STICK WITH THEM THROUGHOUT THEIR JOURNEY.

>> AND WHITLOCK, WE HAVE ABOUT 45 SECONDS.

CAN YOU!

AND HOW WALGREENS AIMS TO DISRUPT THE MODEL HOW CLINICAL TRIALS ARE CONDUCTED?

>> WELL, I JOINED WALGREENS A YEAR AGO.

IT IS THE MOST EXCITING OPPORTUNITY OF MY CAREER.

THERE ARE THREE SERVICE LINES FOR THE REAL-WORLD EVIDENCE CLINICAL TRIALS BUSINESS.

THE PREDOMINANT THEME IS PATIENT RECRUITMENT.

WE KNOW THAT IS THE LION'S SHARE OF A BUDGET, AND THAT TRIAL RECRUITMENT IS OFTEN NOT SUCCESSFUL, SOMETIMES TRIALS HAD TO STOP BECAUSE RECRUITMENT IS POOR.

WE LEARNED DURING THE PANDEMIC THAT, AGAIN, THE USE OF DIGITAL TECHNOLOGY ENABLES TELEMEDICINE CONSULTATIONS.

IF YOU CAN MAKE THE CONVENIENCE OF THE TRIAL RELEVANT FOR THE EXPERIENCE THAT A PERSON HAS -- TRANSPORTATION IS A BIG ISSUE FOR MANY PEOPLE, AND IF YOU ARE TRYING TO RECRUIT PEOPLE WHO HAVE TO TAKE AN AVERAGE OF TWO HOURS TO REACH A SITE, THAT MAY BE A BARRIER TO PARTICIPATION.

IF YOU CAN HELP THEM WITH EITHER A VIRTUAL VISIT WHERE WARRANTED OR BY HELPING THEM WITH THE TRANSPORTATION TO A LOCAL SITE SUCH AS A WALGREENS, THAT IS A BETTER OPTION FOR PEOPLE.

>> KENDALL?

REAL-WORLD EVIDENCE.

I AM GLAD YOU WERE ABLE TO GET THAT THIRD ONE IN, BUT WE ARE OUT OF TIME.

I KNOW YOU ARE AT THE BLACK WOMEN'S EXPO WORKING ON THIS AS WELL.

WE WILL HAVE TO LEAVE IT THERE FOR NOW.

KENDALL WHITLOCK, DANA DORIAN, DR. JUKKA STEINBERG, THANK YOU FOR JOINING US.

WALGREENS IS HOSTING A HEALTH AND WELLNESS CORNER AT THE BLACK WOMEN'S EXPO TO RAISE AWARENESS AND ANSWER ATTENDEE QUESTIONS REGARDING CLINICAL TRIALS.

>>> UP NEXT, A SETTLEMENT REACHED IN THE CASE OF HENRIETTA LACKS.

>> 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 POLIO VACCINE, A.I.D.S.

RESEARCH, ADVANCES IN CANCER RESEARCH, IN VITRO FERTILIZATION, AND MANY OTHER APPLICATIONS.

THE FAMILIES ATTORNEY SADIE REACHED A CONFIDENTIAL SETTLEMENT WITH THE BIOTECH COMPANY, FISHER SCIENTIFIC, EARLIER THIS WEEK.

THE MAXIMUM IS IN CHICAGO OFTEN THE NEWS OUTLETS ARE COVERING SOME VERSION OF THE SAME STORY.

WEEKEND VIOLENCE.

WE RECENTLY SPOKE WITH SOME FUTURE MEDIA MAKERS ABOUT THEIR IMPRESSIONS OF HOW VIOLENCE IS COVERED IN THEIR COMMUNITY, AND HOW THEY PLAN TO CHANGE IT.

THEY ARE PART OF A FREE SPIRIT MEDIA, AN ORGANIZATION THAT HAS BEEN AROUND MORE THAN 20 YEARS, WORKING WITH YOUNG PEOPLE ON MEDIA ARTS AND CREATIVE STORYTELLING, IT'S NEW HOME IS IN CHICAGO'S NORTH LAWNDALE COMMUNITY.

MANY PARTICIPANTS SAY THE MEDIA IS LARGELY MISSING OUT ON WHAT THAT NEIGHBORHOOD REALLY MEANS TO THEM.

>> Reporter: 19-YEAR-OLD JULIA DAVIS SAYS SHE IS NOT ONE FOR WATCHING LOCAL TV NEWS.

>> THEY DON'T SHOW THE LOVE WE SHOW OR HOW WE SUPPORT EACH OTHER IN THE NEIGHBORHOOD, HOW WHEN YOU WALKING ON THE STREET, PEOPLE JUST GO HEY, HOW YOU DOING, THEY TALK TO YOU.

THEY DON'T SHOW THAT PART.

>> Reporter: BECAUSE OF THE COVERAGE OF VIOLENCE.

>> IT IS KIND OF TRAUMATIZING BEFORE YOU GO TO SLEEP.

ALWAYS SOUNDING LIKE THE NEGATIVE, INSTEAD OF THE POSITIVE GOING ON BUT WHEN YOU HEAR ABOUT CHICAGO, THEY ALWAYS TALK ABOUT THE BAD THINGS, SO MUCH VIOLENCE.

>> Reporter: SHE IS NOT ALONE.

24-YEAR-OLD NATE POINTS TO A LACK OF CONTEXT IN MAINSTREAM MEDIA COVERAGE.

THAT'S HOW YOU PORTRAY A SUBJECT TRULY AFFECT HOW SOMEONE DIGESTS IT.

SO, I THINK THAT WE DON'T REALLY CONTEXTUALIZE THE PEOPLE WHO WE DEFINED AS PERPETRATORS AND VICTIMS, TO UNDERSTAND HOW A LACK OF RESOURCES AFFECT THEIR DECISION-MAKING, HOW THEY, THEMSELVES , HAVE BEEN VICTIMIZED BY THE SYSTEM THAT THEY ARE STRUGGLING TO THRIVE IN.

>> Reporter: THEY ARE BOTH PARTICIPANTS IN A FREE SPIRIT MEDIA, A NONPROFIT THAT WORKS WITH YOUNG PEOPLE 11 FOR 25 YEARS OLD FROM THE WEST AND SOUTH SIDES OF CHICAGO.

>> THAT IS GOING TO TAKE A LOT.

>> Reporter: STAFF HERE WORK TO TEACH STUDENTS TO CREATE MEDIA ART PROJECTS LIKE SHORT FILMS AND NEWS STORIES TO AMPLIFY THEIR OWN VOICES.

>> THEY CAN ALSO BE THEIR OWN VILLAINS, BUT IT IS UP TO THEM TO TELL THEIR OWN STORIES.

THEY HAVE THE MEANS, IN THE AGE WE EXIST IN.

>> THE FIRST ONE I WILL SHOW YOU IS KIND OF HOW I PUT THESE ON FOR WORK.

>> Reporter: TODAY, THEY ARE RECEIVING TRAINING FROM A FREE SPIRIT ALUMNUS, PHOTOGRAPHER SEAN JORDAN.

>> DIFFERENT TYPES OF CAMERAS, WHAT TO LOOK FOR IN THE CAMERA.

HOW HE STARTED FROM THIS SPECIFIC PROGRAM, GAVE ME HOPE.

>> Reporter: AND LEARNING TO TELL THEIR OWN STORIES, HOW THEY PLAN TO CHANGE THE NARRATIVE.

>> I WANTED TO KNOW IT IS OKAY TO BE UNIQUE, BE YOURSELF, YOU DON'T HAVE TO BE NOBODY ELSE.

NOBODY IS PERFECT, IT JUST REALLY SHINES A LIGHT ON HOW YOU DON'T KNOW ANYBODY.

>> Reporter: DIRECTOR CANDACE ALSO POINTS TO THE NEED FOR STORIES ABOUT THE COMMUNITY TO COME FROM THE COMMUNITY, A MORE COMPLETE PICTURE.

>> WE HAVE YOUNG PEOPLE HERE WHO ARE WALKING DOWN THE STREET, LIGHT, THIS IS HOME FOR ME.

I'M NOT SAYING THE SCARY STUFF DOES NOT HAPPEN, BUT THAT IS MY GRANDMA'S HOUSE, THAT IS MY SCHOOL LOCATION.

SO, HOW DOES THE NEWS COVERAGE OF A GANG GET ON THE GROUND, WHEN THE YOUNG PEOPLE ARE ALREADY ON THE GROUND, THEY WILL BE ABLE TO TELL THE STORIES BECAUSE THEY UNDERSTAND THROUGH FRESH EYES.

>> Reporter: THE GROUP HOLDS MORE CHICAGOANS AND THOSE OUTSIDE THE CITY CAN EXPERIENCE THEIR COMMUNITY THROUGH THE LENS OF YOUNG STORYTELLERS LIKE NATE AND LEAH.

>> THEY ALWAYS HAVE LIKE LOT CLUB PARTIES OR GIVEAWAYS, LIKE THE SCHOOL IS ACTUALLY STILL OPEN, THEY JUST HAD A BARBECUE FOR ALUMNI WHO GRADUATED.

IT IS ABOUT GIVING BACK.

BUT THEY DON'T SHOW THAT.

>> YOU SEE POSITIVE IN YOUR COMMUNITY.

LIKE I EXPERIENCE THEM.

>> FREE SPIRIT MEDIA PARTNERED THIS SUMMER WITH ONE SUMMER CHICAGO, THE CITY'S YOUTH SUMMER JOBS PROGRAM, PROVIDING PROFESSIONAL DEVELOPMENT FOR INTERNS WORKING AROUND THE CITY.

THAT PROGRAM ENDED TODAY, BUT OF COURSE, FREE SPIRIT PROGRAMMING WILL RESUME IN THE FALL.

BELIEVE IT OR NOT, THE FIRST DAY OF SCHOOL IS JUST AROUND THE CORNER.

THAT MEANS SO ARE CHICAGO'S HISTORIC -- PARADE, THE LARGEST AFRICAN-AMERICAN PARADE IN THE U.S., DRAWING AND NEARLY 300,000 PEOPLE AND SPENDING ALMOST THREE MILES, ACCORDING TO THE CHICAGO VENDOR CHARITIES.

THIS USING, PERMITTING AND PEACE, LOCK BY BLOCK.

HERE IS A PREVIEW.

>> COMMUNITY EXCITED LET US KNOW HOW EXCITED THEY ARE TO COME OUT.

THIS YEAR, WE HAVE AMAZING MARSHALS, TWO TIME GRAMMY AWARD-WINNING POET LAUREATE J I.V., SO WE ARE EXCITED ABOUT THAT.

AT THE END OF THE PARADE, IT LEADS INTO WASHINGTON PARK, WHERE ALL OF OUR SPONSORS AND COMMUNITY ORGANIZATIONS, EVERYBODY COMES TOGETHER TO SUPPORT OUR STUDENTS AND PREPARE THEM TO GO BACK TO SCHOOL, SO THEY GET BACKPACKS, ARE FREE HAIRCUTS FOR THE BOYS, FREE BRAIDING FOR THE GIRLS, A KIND OF SCHOOL SUPPLIES, RESOURCES FOR FAMILIES, SO IT IS A FAMILY EVENT.

GOING TO BE ENTERTAINMENT, WE HAVE A STAGE THERE.

LOTS OF GOOD STUFF HAPPENING.

SOUTHSIDE AND WEST SIDE COMING TOGETHER, ALWAYS HAVE BARBECUE GOING UP AND DOWN THE STREET.

FOUR GENERATIONS OF FAMILIES RUN THE ORGANIZATION, WE ARE ALSO WORKING TOGETHER WITH MY HOOD, MY CITY.

JAMAAL COLE.

THAT IS WHY OUR THEME THIS YEAR IS PARADING IN PEACE, BLOCK BY BLOCK.

WE JUST WANT TO LET PEOPLE KNOW THAT WHAT WE DOING, WE ARE CELEBRATING AND COMING TOGETHER, ALL ABOUT WORKING TOGETHER , FAMILIES COMING TOGETHER, AND PEACE IN OUR COMMUNITY BLOCK BY BLOCK.

WE WERE INSPIRED BY "MY BLOCK" INSPIRED THAT WE HAD TO PAY ATTENTION TO WHAT IS GOING ON IN OUR COMMUNITY.

SO WE DECIDED TO COME TOGETHER.

YEAR-ROUND, WE WERE CONSTANTLY, THAT IS WHY WE SAY BUD BILLIKEN 365, BECAUSE IT REALLY IS THAT.

AS SOON AS WE FINISH THIS PARADE, WE START WORK ON THE NEXT ONE.

>> THIS PARADE IS SATURDAY, AUGUST 12th.

IT STRETCHES DOWN DR. MARTIN LUTHER KING JR. DRIVE, THROUGH THE HISTORIC BROWNSVILLE NEIGHBORHOOD INTO WASHINGTON PARK.

FOR MORE INFORMATION, YOU CAN VISIT OUR WEBSITE.

THAT IS OUR SHOW TONIGHT.

BE SURE TO CHECK OUT NEWS.WTTW.COM FOR THE LATEST FROM WTTW NEWS.

IF YOU'RE WATCHING US FRIDAY NIGHT, YOU CAN ALSO CATCH BLACK VOICES AND LATINA VOICES ON SATURDAYS, BEGINNING AT 6:00 P.M. FOR ALL OF US AT CHICAGO TONIGHT: BLACK VOICES, I AM BRANDIS FRIEDMAN.

STAY HEALTHY AND SAFE.

HAVE A GOOD NIGHT.

>> CLOSED CAPTIONING IS MADE POSSIBLE BY ROBERT A CLIFFORD AND CLIFFORD LAW OFFICES, A CHICAGO PERSONAL INJURY AND WRONGFUL DEATH FIRM, AND PROUD SPONSOR OF PROGRAMMING THAT OFFERS ADVICE AND STRATEGY TO