Greater Boston
May 5, 2022
Season 2022 Episode 65 | 28m 30sVideo has Closed Captions
Greater Boston Full Show: 05/06/2022
Greater Boston Full Show: 05/06/2022
Problems playing video? | Closed Captioning Feedback
Problems playing video? | Closed Captioning Feedback
Greater Boston is a local public television program presented by GBH
Greater Boston
May 5, 2022
Season 2022 Episode 65 | 28m 30sVideo has Closed Captions
Greater Boston Full Show: 05/06/2022
Problems playing video? | Closed Captioning Feedback
How to Watch Greater Boston
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Learn Moreabout PBS online sponsorship>> Neisloss: TONIGHT ON "GREATER BOSTON," I'M LIZ NEISLOSS, IN FOR JIM BRAUDE.
AND WE'RE TAKING A CLOSER LOOK AT THE AID-IN-DYING DEBATE, WITH BEACON HILL LAWMAKERS ONCE AGAIN CONSIDERING THE ISSUE.
I'M JOINED BY AN ADVOCATE, WHOSE WIFE ENDED HER LIFE AFTER A TERMINAL DIAGNOSIS, AND A DISABILITY RIGHTS ACTIVIST WHO HAS SERIOUS CONCERNS ABOUT SUCH A POTENTIAL LAW.
THEN LATER, IF THE SUPREME COURT FOLLOWS THROUGH IN OVERTURNING ROE V WADE, HOW YOUR ONLINE PRESENCE COULD PRETTY EASILY HELP PEOPLE FIGURE OUT IF YOU BROKE THE LAW IN GETTING AN ABORTION.
>> Neisloss: MEDICAL AID IN DYING, KNOWN TO MANY AS PHYSICIAN-ASSISTED SUICIDE, HAS A LOT OF SUPPORT RIGHT NOW IN MASSACHUSETTS.
I "BOSTON GLOBE" SUFFOLKS UNIVERSITY POLL FOUND NEARLY 77% OF PEOPLE BELIEVE AN ADULT WITH AN INCURABLE IL NS WHO IS MEN TALTLY CHALLENGE-- SHOULD BE ABLE TO REQUEST THE MEDICATION THAT WOULD END THEIRLIFE, AND AFTER MORE THAN TEN YEARS OF LEGISLATEDDIVE EFFORTS THAT ISSUE IS ONCE AGAIN BEFORE STATE LAWMAKERS WITH A BILL THAT ADVANCED THROUGH ONE COMMITTEE AND IS CURRENTLY SITTING WITH ANOTHER.
OF COURSE, NOT EVERYONE IS ON BOARD WITH THE IDEA, AND SOME HAVE SERIOUS CONCERNS ABOUT HOW SUCH A LAW COULD POTENTIALLY BE ABUSED, LIKE JOHN KELLY, WHO JOINS ME NOW.
HE'S THE DIRECTOR OF SECOND THOUGHTS MASSACHUSETTS, WHICH DESCRIBES ITSELF AS A PROGRESSIVE DISABILITY RIGHTS GROUP AGAINST ASSISTED SUICIDE.
WE'RE ALSO JOINED BY DAN DIAZ, WHO'S IN TOWN THIS WEEK TO MEET WITH LAWMAKERS, PUSHING FOR PASSAGE OF THIS BILL, AFTER HIS LATE WIFE BRITTANY MAYNARD MADE NATIONAL NEWS IN 2014, WITH HER DECISION TO END HER LIFE FOLLOWING A TERMINAL DIAGNOSIS.
DAN, PERHAPS YOU CAN REMIND PEOPLE YOUR PARTICULAR STORY, SOME MAY BE VERY FAMILIAR WITH YOUR WIFE'S SITUATION, AT THE AGE OF 29, SHE WAS DIAGNOSED WITH A TERMINAL BRAIN CANCER.
AND YOU BOTH MOVED TO OREGON WHICH THEN WAS REALLY THE STATE THAT ALLOWED HER TO TAKE ADVANTAGE OF PHYSICIAN-ASSISTED DEATH AND SHE TOOK A FATAL COURSE OF BAR BIT ATS I BELIEVE.
PEOPLE REALLY WANT TO UNDERSTAND THE THOUGHT-OF-SOMEONE WHO IS GOING THROUGH THAT KIND OF PAIN, WHO GETS TO A DECISION THAT THEY WANT PHYSICIAN ASSISTED SUICIDE.
YOU CAN PAINT THE PICTURE OF WITH WAS GOING ON THEN AND REALLY WHAT WAS GOING THROUGH HER MIND, HOW SHE CAME TO THAT DECISION.
>> CERTAINLY.
SO WE DISCOVERED THAT BRAIN TUMOR WAS ACTUALLY NEW YEAR'S DAY, JANUARY 1ST, 2014.
BRITTANY HAD BRAIN SURGERY TO REMOVE THE TUMOR MATERIAL THAT THEY COULD SAFELY GET TO.
THEY WERE ONLY ABLE TO GET ABOUT 35 PERCENT OF THAT TUMOR.
IT WAS MASSIVE.
THE THAT POINT SHE TOLD HER THAT SHE HAD THREE TO FIVE YEARS TO LIVE, BRITTANY IS ONLY 29 YEARS OLD, MIND YOU.
AND UNFORTUNATELY JUST THE NEXT FOLLOWUP MRI THE TUMOR SHOWED SIGNS THAT IT WAS GROWING AGGRESSIVELY, INDICATIVE OF A GBI, GLIO BLASTOMA MULTIFORM AND AT THAT POINT BRITTANY SAID WE WILL MOVE TO OREGON BECAUSE AT LEAST THERE SHE COULD TAKE BACK THAT LITTLE BIT OF CONTROL, BRITTANY WAS NOT GOING TO ALLOW THE BRAIN TUMOR TO BASICALLY BE IN THE DRIVER'S SEAT AND DICTATE HOW MUCH SUFFERING SHE MIGHT HAVE TO ENDURE.
SHE WAS ALREADY DEALING WITH PAIN, THAT NOT EVEN MORPHINE COULD ALLEVIATE, NAUSEA, VOMITING.
THE SEIZURES TERRIFIED HER THE MOST.
AND SO WE MOVED TO ORGANIZE ORGANIZE, BRITTANY HAD TO FIND A HOUSE FOR US TO RENT ON CRAIG'S LIST, FIND A NEW MEDICAL TEAM, ESTABLISH RESIDENCY, AND DURING THAT TIME WHILE WE WERE THERE, WE WERE RESEARCHING EVERY CLINICAL TRIAL, DOING EVERYTHING WE CAN TO EXTEND HER LIFE.
BUT THE TRUTH IS THAT MODERN MEDICINE AND HOSPICE AND PALLIATIVE CARE ARE WONDERFUL FIELDS OF MEDICINE, BUT THEY ARE NOT ABLE TO KEEP A PERSON FROM SUFFERING IN ALL CASES.
AND SO BRITTANY SIMPLY HAD THAT ASSURANCE THAT IF THINGS GOT BAD SHE COULD UTILIZE, IT IS A SLEEPING MEDICINE, SHE COULD UTILIZE THAT MEDICATION AND EXPERIENCE A GENTLE DYING PROCESS.
THAT IS WHAT THIS LEGISLATION IS ABOUT, AND THE SAFEGUARDS ARE RIGOROUS THAT ARE IN PLACE LZ BACK THEN DID YOU HAVE ANY MOMENT THAT YOU TRIED TO CONVINCE HER THAT THIS WAS NOT THE RIGHT COURSE?
WERE YOU ALWAYS FEELING LIKE THIS WAS RIGHT?
>> WELL YEAH, AND WHAT YOU JUST MENTIONED, ALONG WITH THE 77 PERCENT OF THE INDIVIDUALS IN MASSACHUSETTS, THE THOUGHT SURROUNDING THIS AND ALL BRATANY WAS DOING WAS PURSUING AN OPTION.
HER HOPE WAS THAT SHE WOULDN'T HAVE TO UTILIZE THE MEDICATION.
BUT SHE WAS PURSUING THE OPTION TO ENSURE THAT SHE DOESN'T HAVE TO SUFFER.
AGAIN THAT IS THE KRUKS OF THIS.
THE OPPONENTS LIKE TO MUDDY THE WATERS AND MAKE IT SEEM LIKE, AND BRING IN THINGS THAT HAVE NOTHING TO DO WITH THIS, THIS IS SELF-DIRECTED.
BRITTANY IS THE ONE MAKING THE DECISION, APPLYING FOR IT, QUALIFYING FOR T AND FINALLY RECEIVING THAT MEDICATION.
SO MY SUPPORT OF HER WAS VERY SIMPLE BECAUSE, AND I CHALLENGE ANY OF THE PEOPLE WATCHING THIS NOW, SIMPLY PUT YOURSELF IN HER SHOES.
AND THINK TO YOURSELF, ARE YOU WILLING TO ROLL THE DICE AND ALLOW CANCER TO DICTATE WHAT YOUR FINAL FEW DAYS ON THIS GREEN EARTH MIGHT BE LIKE.
AND SO MY SUPPORT OF HER WAS RECOGNIZING THAT IF I WAS IN HER SHOES, I WOULD BE DOING THE SAME THING.
I WOULD JUST WANT TO KNOW THAT I HAD THAT OPTION.
>> ALL RIGHT, JOHN KELLY, I WANT TO KNOW WHAT BROWTS YOU TO THIS ISSUE.
>> WHAT BROUGHT ME TO THIS ISSUE WAS THAT I HAD AN ACCIDENT AT THE AGE OF 25.
AND PEOPLE DESCRIBED ME ASPR LYZED FROM THE NECK DOWN.
AND MY OWN FATHER WISHED THAT I HAD DIED IN THE ACCIDENT, AND PEOPLE HAVE TOLD ME THAT THEY WOULD RATHER BE DEAD THAN LIKE ME.
AND SO MY HEART GOES OUT TO MR. DIAZ AND BRITTANY'S FAMILY FOR WHAT BRITTANY WENT THROUGH.
BUT INDIVIDUAL CASES MAKE BAD KAITION LAW.
AND SO WE HAVE A SITUATION WHERE MANY PEOPLE DO NOT REPORT PAIN AS A MAJOR ISSUE, THAT WHEN IT COMES TO THE ACTUAL DECISION-MAKING, IT TURNS OUT TO BE BASED ON DISABILITY ISSUES.
AND THE VERY SAME ISSUES THAT PEOPLE USE TO DISQUALIFY ME AS A FULL HUMAN BEING, ARE USED BY PEOPLE TO DISQUALL THEMSELVE-- DISQUALIFY THEMSELVES AND BY THEIR FAMILIES TO DISQUALIFY THEMSELVES FROM LIVING BECAUSE OF SUCH THINGS AS FEELING LIKE A BURDEN.
MORE THAN HALF OF PEOPLE OUT IN OREGON OVER THESE YEARS ARE FEELING LIKE A BURDEN.
THAT MEANS THAT OTHER PEOPLE ARE MAKING THEM FEEL LIKE A BURDEN.
WE LOOK TO SYSTEMIC ISSUES LIKE THE FACT THAT THERE'S NO HOME CARE BENEFIT IN MEDICARE.
PEOPLE ARE FACED WITH THE CHOICE OF GOING TO A NURSING HOME OR LIVING AT HOME WITH RESENTFUL HELPERS NOT GETTING THE NEEDS THEY MET, AND IF SOMEONE WHO FELT LIKE A BURDEN, I CAN TELL YOU IT IS JUST A HOOCIAL FEELING.
>> SO DAN, HOW DO YOU GET AROUND THAT POINT THAT FAMILY MEMBERS WHO WANT TO JUST MAKE LIFE EASIER FOR THE FAMILY MEMBERS THEY ARE BURDENNENING WILL CHOOSE THIS PATH.
>> YES, FOR STARTERS WE HAVE OVER 40 YEARS OF DATA AND ACTUALLY A LETTER WHICH WE REGULARLY REACH OUT TO.
THE DISABILITY RIGHTS-- A FEDERALLY-- MANDATED UNDER FEDERAL LAW TO INVESTIGATE COMPLAINTS OF ABUSE OR NEGLECT OF INDIVIDUALS WITH DISABILITIES INCLUDING INAPPROPRIATE ACTIONS TAKEN TO HASTEN THE DEATH OF AN INDIVIDUAL.
I'M READING FROM THE LETTER, FROM THE EXECUTIVE DIRECTOR.
AND IT SAYS THAT SINCE THE PASSAGE OF OREGON'S DEATH WITH DIGNITY LAW, THIS COVERS 20 YEARS, DRO HAS NOT, HE WRITES DRO HAS NEVER TO MY KNOWLEDGE RECEIVED A COMPLAINT THAT A PERSON WITH DISABILITIES WAS COERCED OR BEING COERCED TO MAKE USE OF THE ACT.
AND THE THING IS THIS.
IT Z, IN ORDER TO QUALIFY FOR THIS, JUST TO BE CLEAR, DO YOU NOT QUALIFY BECAUSE ARE YOU DISABLED.
DO YOU NOT QUALIFY BECAUSE YOU ARE OLD OR INFIRM.
TWO PHYSICIANS INDEPENDENT OF ONE ANOTHER HAVE TO AGREE THAT THIS INDIVIDUAL IS TERMINALLY ILL WITH SIX MONTHS OR LESS TO LIVE.
THAT PERSON HAS TO BE MENTALLY COMPETENT.
THEY MAKE THE REQUEST BOTH VERBALLY AND IN WRITING, THERE IS A WAITING PERIOD THERE ARE WITNESSES INVOLVED.
THE BIGGEST SAFEGUARD IS THAT PERSON HAS TO CONSUME THIS MEDICATION ON HER OWN.
AND SO WHENEVER I'M ASKED WELL, WHAT ARE THE PROTECTIONS, THE SAFEGUARDS THAT I WOULD OFFER SOMEBODY TO MEMBERS OF THE DISAIBLGHTD COMMUNITY, IT'S BUILT RIGHT INTO THE LAW.
MY QUESTION IS THIS, WHAT WOULD YOU OFFER MY WIFE BRITTANY SO THAT SHE OR ANYBODY HERE IN MASSACHUSETTS, SO THAT SHE DOES NOT HAVE TO ENDURE BEING TORTURED TO DEATH BY THAT BRAIN TUMOR.
>> JOHN, HOW DO YOU ANSWER THAT QUESTION?
I MEAN HOW MUCH PAIN IS ENOUGH.
I MEAN SHOULD THE GOVERNMENT BE DECIDING HOW MUCH MAIN PEOPLE SHOULD ENDURE?
>> I'M NOT A DOCTOR LIZ, AND THAT'S NOT UP TO ME.
BUT I'VE BEEN REASSURED BY PALLIATIVE CARE EXPERTS THAT PAIN CAN BE RELIEVED AND THAT PEOPLE CAN BE MADE COMFORTABLE, AND IF NEED BE THERE IS PALLIATIVE IS HE DAITION IN WHICH THE PERSON IS IS HE DATED AND ALLOWED THE DYING PROCESS TO OCCUR WITHOUT FEELING PAIN.
NOW I WOULD JUST LIKE TO TALK ABOUT THIS TERMINAL DIAGNOSIS THAT MR. DIAZ HOLDS UP AS SOME KIND OF SCIENTIFIC FACT.
AN NPR REPORT SAID RECENTLY THAT UP TO 20 PERCENT OF PEOPLE WHO ENTER HOSPICE WITH A SIX MONTH DYINGS NO SIS, DO NOT DIE IN SIX MONTHS.
TED KENNEDY WAS GIVEN THREE TO SIX MONTHS TO LIVE, IN MASSACHUSETTS, AND HE LIVED IT 15 MORE MEMORY-FILLED MOMENTS AS DESCRIBED BY HIS WIDOW VIRGINIA KENNEDY.
>> SO DAN, THIS IS AN INTERESTING POINT.
IF DISEASE PROGNOSIS, IF A DIAGNOSIS IS UNCERTAIN AND IN MANY CASES WITH CANCER, THOSE PROG NO CEASE ARE WRONG, ISN'T THIS A BIT LIKE CAPITAL PUNISHMENT WHERE YOU MAY END UP KILLING PEOPLE WHO ACTUALLY ARE INNOCENT?
>> WELL, NO, BECAUSE NOTHING IS EVER DONE TO THE PATIENT.
SO AND THANK YOU FOR BRINGING UP THIS POINT.
I WANT TO HAVE THIS CONVERSATION.
OUTLIVING YOUR PROGNOSIS, WHETHER YOU ARE IN HOSPICE CARE OR QUALIFIED FOR THIS PROGRAM, THAT IS CALLED SUCCESS.
THE GOAL IS TO LIVE, THE GOAL IS TO LIVE AS LONG AS POSSIBLE.
LET ME PUT IT THIS WAY.
I WOULD LIKE NOTHING MORE THAN FOR BRITTANY TO BE SITTING RIGHT HERE NEXT TO ME, EXPLAINING TO YOU FOR HER SELF-WHY HAVING THE OPTION OF MEDICAL AID AND DIEING IS SO MEANINGFUL TO HER.
AND NOW AS FAR AS THE STUDIES, BY AND LARGE WHAT THEY SHOW IS THAT DOCTORS IF ANYTHING TINNED TO OVERESTIMATE WHAT A PERSON, THE LIFE EXPECTANCY THAT THEY HAVE.
BUT AGAIN FOR THOSE WHO OUTLIVE WHATEVER DIAGNOSIS OR THE LENGTH OF TIME THAT THEY HAVE, MAY HAVE LEFT AGAIN THAT IS CALLED SUCCESS.
SIX MONTHS IS SIMPLY TO QUALIFY FOR THIS MEDICATION BUT THAT'S NOT SOME SORT OF DEADLINE WHERE A PERSON NEEDS TO UTILIZE IT.
HOWEVER, AND THE DATA SPORTS THIS, THAT BY AND LARGE THOSE INDIVIDUALS THAT ARE ENROLLED IN HOSPICE, SO MANY TIMES AND YOU HEAR THIS FROM MEDICAL DIRECTORS OF HOSPICE CARE FACILITIES, AND THE NURSES WHO SAY PEOPLE COME TO US TOO LATE.
THEY COME TO US.
THEY ARE BASICALLY RUSHING IN THE DOOR SAYING HURRY, HURRY, HURRY, OUR LOVED ONE IS SUFFERING AND THAT PERSON IS ENROLLED IN HOSPICE FOR MAYBE A WEEK OR TWO WEEKS AND THEN THEY DIE.
AND BRITTANY HAD EXCELLENT PALLIATIVE AND HOSPICE CARE.
AND THE SERVICES AND RESOURCES THAT IT PROVIDES, JUST AS AN ASIDE, AS A PLO UPON-- PROPONENT OF THAT.
THE GENERAL MESSAGE, BRITDANY'S MESSAGE WAS MUCH MORE THAN JUST MEDICAL AID AND DYING.
HAVE THESE CONVERSATIONS EARLY, FILL OUT YOUR ADVANCED HEALTH CARE DIRECTIVES.
THAT WAS BRITTANY'S TRUE MESSAGE AS FAR AS END OF LIFE CARE.
MEDICAL AID AND DYING WAS A PART OF THAT FOR HER AND SHE WANTED THIS TO BE AVAILABLE FOR PEOPLE TO UTILIZE IF THEY WERE TO FIENGD THEMSELVES IN HER PREDICTMENT.
>> DAN, I KNOW YOU MENTIONED THE QUESTION ABOUT THE SLIPPERY SLOPE MANY TIMES.
BUT IF FOR EXAMPLE SOMEONE IS UNABLE TO SELF-ADMINISTER THE PILL THEY ARE SUPPOSED TO ADMINISTER, WHAT HAPPENS THEN?
DOES SOMEONE GIVE THEM THE BILL AND IS THAT NOT A STEP TOWARD YOUTH NAISHA.
>> NO,-- .
>> AS I MENTIONED THE CRITERIA FOR UTILIZING THIS PROGRAM IS THAT PERSON HAS TO BE ABLE TO CONSUME THOSE MEDICATIONS, BRITTANY HAS TO BE ABLE TO DRINK.
IT WAS A WHOLE PROCESS.
IN HER CASE IT WAS-- THERE WERE CAPSULES WE HAD TO OPEN IT.
THE POWDER WAS OPENED INTO A GLASS, THAT POWDER WAS MIXED WITH WATER.
AND THEN BRITTANY HAD TO BE ABLE TO CONSUME THAT MED QUAITION IT IS NOT SOMETHING GIVEN TO HER, ST NOT SOMETHING THAT IS THROUGH AN IV.
THAT PATIENT HAS TO VOLUNTARILY CONSUME THAT ON THEIR OWN.
BUT WHAT YOU MENTIONED IS INTERESTING BECAUSE THAT, LET'S BE HONEST.
THAT IS CURRENTLY WHAT HAPPENS BEHIND CLOSED DOORS RIGHT NOW.
IN THE ABSENCE OF THIS LEGISLATION, PEOPLE ARE TAKING MATTERS INTO THEIR OWN HANDS, AND THAT IS WHERE I WOULD SAY, WITH ALL RESPECT, MR. KELLY, THAT IS WHERE THE ABUSE IS OCCURRING.
PEOPLE WILL STOCK PILE MEDS, THESE ARE THE MEDS RIGHT HERE.
THIS IS HYDRO-- THIS IS DIALUDID, FOUR TIMES STRONGER THAN MORPHINE, 50 OF THESE PILLS IS 200 MILL I GRAMS, THAT IS THE EQUIVALENT OF 800 MILL I GRAMS OF MORPHINE.
I WEIGH 190 POUNDS, THAT IS ENOUGH TO PUT ME TO SLEEP FOR GOOD TONIGHT.
AND IN ORDER FOR BRITTANY TO GET THIS, YOU JUST HAVE TO BE IN PAIN.
THERE IS NOT TWO PHYSICIANS REVIEWING THE CASE, MAKING SURE THAT ARE YOU TERM NALLY ILL, MENTALLY COMPETENT, NOT SUFFERING FROM DEPRESSION, THIS IS WHAT OCCURS BEHIND CLOSED DOORS.
>> WELL, FIRST OFF, FOUR PERCENT OF PEOPLE SENTENCED TO CAPITAL PUNISHMENT HAVE THE ESTIMATED TOSH INNOCENT.
OUT IN OREGON THEY STARTED REPORTING LAST YEAR THAT FOUR PERCENT OF PEOPLE WERE STILL ALIVE AT SIX MOBILITIES.
WE COULD HAVE A LOT MORE SUCCESS AS MR. DIAZ DEFINES IT IF 12 TO 15 PERCENT OR EVEN 20 PERCENT WOULD SURVIVE SIX MONTHS LIKE THE STUDY SHOWS.
THEN MR. DIAZ SAYS THAT OIRKSZ, YOU HAVE TO TAKE IT YOURSELF, THERE IS NO REQUIREMENT THERE IS HAPPENS IF YOU DON'T DO IT.
AND IT ST AT HOME T IS BEHIND CLOSED DOORS.
AND WE HAVE NO IDEA WHAT HAPPENS WITH THE PEOPLE WITH NO OFFICIAL WITNESS THERE.
AND AS FAR AS-- NO ABUSES, MEES GOOGLE THE NAME WENDY MELCHER WHO SHOW GOT INCLUDED IN THE DEATH WITH DIGNITY PROGRAM AFTER TWO NURSES TRIED TO KILL HER WITH MORE FEE SU POS TORES.
SO OREGON NURSING BOARDS HID IT AND DID NOTHING ABOUT IT.
>> OKAY, JOHN, DAN, WE UNFORTUNATELY I AM-- I DO HAVE TO CUT YOU OFF, I JUST WANT TO END ON THIS NOTE, IN 2012 THR WAS A BALLOT ON THIS ISSUE IN MASSACHUSETTS.
IT WAS DEFEATED.
BY A VERY SMALL MARGIN.
51 PERCENT WERE AGAINST IT.
AND A RECENT POLL AS WE MENTIONED SHOWS 77 PERCENT IN FAVOR.
SO JOHN, DOESN'T THIS SHOW THAT PEOPLE WANT THIS TO HAPPEN NOW?
>> WELL KNOW, IT IS A CURIOUS THING ABOUT POLLS THAT THE LATEST POLL IS OF LIKELY VOTERS.
LIKELY VOTERS HAVE MORE EDUCATION AND IT SHOWS THE CLASS NATURE OF SUPPORT AND OPPOSITION OF THIS BILL.
IN 2012 THE CITY OF LAWRENCE VOTED 69 PERCENT AGAINST.
PEOPLE WHO ARE WORKING CLASS AND POOR DO NOT SUPPORT THIS.
AS T IS SUPPORTED BY WEALTHIER, WHITER PEOPLE WHO HAVE LOTS OF CONTROL IN THEIR LIVES.
>> WE DO HAVE TO LEAVE IT THERE.
I'M SORRY.
>> THAT POLLING FROM 2012 BY THE WAY, ITS LOSS OF 51% TO 49 PERCENT WAS BECAUSE THE CATHOLIC CHURCH IN THE LAST SIX WEEKS DUMPED A LITTLE OVER $5 MILLION IN THEIR CAMPAIGN AGAINST THIS.
>> RIGHT, RIGHT.
>> THAT IS WHERE THAT CAME FROM.
>> THANK YOU VERY MUCH, I UNFORTUNATELY WE COULD KEEP GOING ON, WE O DO HAVE TO WRAP IT UP, DAN, JOHN, THANK YOU VERY MUCH FOR YOUR TIME.
>> THANK YOU.
>> THANK YOU, LIZ, APPRECIATE IT MOST OF THE COUNTRY SUPPORTS ABORTION, AND BELIEVES THAT INFORMATION ABOUT WHETHER SOMEONE HAS HAD AN ABORTION SHOULD BE BETWEEN THAT PERSON, THEIR DOCTOR, AND WHOEVER ELSE THEY CHOOSE TO SHARE THAT INFORMATION WITH.
BUT IN WHAT FEELS LIKE A HORRIFYING CROSS BETWEEN A GEORGE ORWELL AND A MARGARET ATWOOD NOVEL, JUST ABOUT ANYONE ELSE CAN ACCESS THAT INFORMATION, TOO, THANKS TO THE INTERNET.
AS A NEW "WASHINGTON POST" PIECE POINTS OUT, GOOGLE SEARCHES FOR ABORTION CLINICS, PHONE LOCATION INFORMATION AND EVEN DATA FROM PERIOD TRACKING APPS, COULD BE BOUGHT BY POLICE AND PRIVATE CITIZENS ALIKE, AND USED TO INVESTIGATE SUSPECTED ILLEGAL ABORTIONS.
OF COURSE, THIS BREACH OF PRIVACY IS NOTHING NEW.
JOINING ME TO DISCUSS ARE THE TWO REPORTERS BEHIND THAT "WASHINGTON POST" PIECE, GEOFFREY FOWLER AND TATUM HUNTER.
SO THIS IS REALLY A DYSTOPIA THAT NO ONE SHOULD BE SURPRISED BY.
GEOFFREY, CAN YOU START BY KRIEBING WHAT YOU FOUND?
>> YEAH, I THINK IT IS A REMINDER THAT THE LINK BETWEEN OUR CIVIL RIGHTS AND OUR DIGITAL RIGHTS IS CLOSER TOGETHER THAN EVER.
AND WHAT WE FOUND TALKING TO PRIVACY ADVOCATES AND ALSO PEOPLE WHO WORK WITH WOMEN SEEKING ABORTIONS IS THAT THE PHONE IS A REPOSITORY OF ALL KINDS OF INFORMATION THAT COULD BE USED AS EVIDENCE AGAINST A WOMAN TRYING TO SEEK AN ABORTION IN PRIVATE IF SHE LIVED IN A STATE WHERE THAT IS AGAINST THE LAW.
THERE ARE SO MANY THINGS THAT IT KNOW PHONE KNOWS ABOUT YOU, IT KNOWS YOUR GOOGLE SEARCHES, IT KNOWS YOUR LOCATION T MIGHT HAVE AN APP THAT IS COLLECTING AND STORING INFORMATION ABOUT YOUR BODY.
ALL OF THAT INFORMATION, ONCE IT IS TAKEN UP BY A CORPORATION IS AVAILABLE TO THE POLICE BECAUSE COMPANIES CAN GET COURT ORDERS TO HAND OVER INFORMATION.
>> SO TATUM, DID YOU ACTUALLY FIND EXAMPLES OF HOW THIS IS WORKING?
I MEAN ARIZONA, MISSISSIPPI, TEXAS, IT WOULD SEESM ALREADY LIKE THIS KIND OF INFORMATION COULD BE MISUSED.
DID YOU FIND ANY EXAMPLES?
>> SO THERE ARE TWO BIG THINGS TO NOTE HERE.
ONE IS THE BROADER CONTEXT OF THE POLICE MAKING INCREASING USE OF MOBILE DEVICE FORENSIC TOOLS IN THEIR OWN INVESTIGATIONS.
ONE 2020 REPORT FOUND THEY USED IT TO INVESTIGATE EVERYTHING FROM MARIJUANA POSSESSION TO GRAFFITI.
THE SECOND THING IS YOU KNOW WHEN YOU DRILL DOWN A LITTLE BIT, THERE IS PRECEDENCE EVEN HERE IN THE U.S. OF WOMEN'S TEXT MESSAGES ABOUT ABORTION AND THEIR INTERNET SEARCH HISTORY ABOUT ABORTION BEING USED AS EVIDENCE AGAINST THEM WHEN THEY ARE ACCUSED OF A CRIME.
>> SO HAVE WE SEEN ANY EXAMPLES WHERE IN THE CASE OF ABORTION, IF I, FOR EXAMPLE, I GO TO A PLANNED PARENTHOOD WHICH BY THE WAY PEOPLE SHOULD BE AWARE, MANY PEOPLE GO THERE SIMPLY FOR REGULAR HEALTH CHECKUPS.
IF ONE WERE TO GO TO A PLANNED PARENTHOOD, DISCUSSION ABORTION, POSSIBLY WHAT WOULD HAPPEN RIGHT NOW?
>> WELL, TWO EXAMPLES THAT MIGHT HELP.
EARLIER IN THE WEEK AFTER THE "ROE VERSUS WADE" DRAFT DECISION GOT LEAKED SOME JOURNALISTS WENT TO A COMPANY CALLED SAFE GRASS WHICH COLLECTS LOCATION DATA FROM PEOPLE'S CELL PHONES, FROM APPS THAT THEY MIGHT USE AND WAS ABLE TO BUY FOR ABOUT $1 OF 0 BUCKS INFORMATION ABOUT ALL THE PEOPLE WHO HAD GONE TO THESE CLINICS, PLANNED PARENTHOOD CLINICS OVER THE LAST WEEK WHERE THEY WERE, BEFORE THEY WENT TO THE CLINIC.
WHERE THEY WENT TO THE CLINIC AND ALSO AFTERWARDS, IT WASN'T LINKED TO THEIR INDIVIDUAL NAMES BUT THAT DATA WAS OUT THERE AND AVAILABLE FOR SALE.
THAT KIND OF THING IS ALREADY POSSIBLE RIGHT NOW.
HAS THIS BEEN USED IN THESE STATES THAT ARE MAKING NEW LAWS TO TRY TO BAN ABORTION, NOT THAT WE ARE AWARE OF SO FAR BUT AS SAID, THERE WAS PLENTY OF PRECEDENT FOR.
THIS THE OTHER EXAMPLE THAT MIGHT HIT HOME IN MASSACHUSETTS IS YOU MAY RECALL A COUPLE OF YEARS AGO SOME ADVOCATES AGAINST ABORTION USED THIS SAME TECHNOLOGY TO PLACE ADS THAT WERE TARGETED OF PEOPLE WHO WERE INSIDE A PLANNED PARENTHOOD CLINIC WITH MOWSAGES ABOUT NOT SEEKING AN ABORTION.
THAT'S CALLED GEO FENGS.
AND MASSACHUSETTS MASS THEN MADE THAT PRACTICE ILLEGAL.
>> SO MAURA HALEY DID GO AFTER THAT PARTICULAR AD AGENCY BUT APPARENTLY SOME OF THAT DATA WAS STILL ABLE TO BE USED.
TATUM, THE LAWS IN THIS COUNTRY WOULD SEEM TO BE VERY LAX ABOUT THIS SORT OF THING.
HOW DO YOU HAVE A SENSE OF HOW GOOD THIS COUNTRY IS AT GOING AFTER THOSE KINDS OF DATA BREACHES?
IS THERE ANY SENSE THAT THERE'S REALLY ANY KIND OF EFFECT OR IMPACT WHEN, IN THE EXAMPLE WE JUST GAVE, IT WAS NOT PARTICULARLY FISKT.
SO WHAT IS IT THAT CAN BE DONE ABOUT DATA BREACHES AT THIS POINT?
>> SO WHEN WE TALKED TO DIGITAL PRIVACY ADVOCATES A LOT OF THEM CALL FOR COMPREHENSIVE PRIVACY LEGISLATION AT THE FEDERAL LEVEL WHICH WOULD CRACKDOWN ON COMPANYS' ABILITY TO COLLECT DATA ABOUT US AND SHARE IT WITH THEIR PARTIES T IS ALSO IMPORTANT TO LOOK AT OUR STANDING FEDERAL PRIVACY LEGISLATION AROUND OUR HEALTH.
RIGHT NOW THAT IS HIPA AND THAT DOESN'T APPLY TO A LOT OF THESE DIGITAL SOURCES, SO RIGHT NOW THE BURDEN FALLS ENTIRELY ON THE INDIVIDUAL TO DECIDE WHAT THEY'RE COMFORTABLE SHARING WITH COMPANIES.
AND UNFORTUNATELY MOOS OF US DON'T HAVE THE TIME TO DO THIS RESEARCH AND FIGURE OUT ALL OF THE BREADCRUMBS WE LEAVE AS WE MOVE THROUGH OUR LIVES.
ONE THING THAT ADVOCATES DID TELL US IS THAT PEOPLE CAN ALWAYS OPT TO NOT SHARE THEIR PERSONAL DEVICES WITH POLICE.
THEY CAN OPT FOR PRIVACY BROWSERS THAT OBSCURE THEIR SEARCH HISTORY OR EVEN HAVE VIRTUAL PRIVATE NETWORK THAT OBSCURES YOUR IDENTITY WHEN YOU BROWSE THE WEB AND LAST OPTING FOREIGN CRYPTED MESSENGERS THAT DON'T STORE YOUR DATA IN PLAIN TEXT WHERE LAW ENFORCEMENT COULD END UP GETTING THEIR HANDS ON IT.
>> BUT TATUM YOU MENTIONED DIGITAL BREADCRUMB, SOME SEEM PRETTY DARN OBVIOUS-- OBVIOUS, PEOPLE ARE USES MENS TALL TRACKING APPS, ONE CALLED FLOW, FOR EXAMPLE.
YOU MILE SAY, PEOPLE SHOULD JUST WRITE THIS SORT OF THING DOWN.
DOESN'T THAT SEEM LIKE A PRETTY OBVIOUS AREA WHERE YOUR PRIVACY COULD BE SWEPT INTO THIS ABORTION ISSUE.
WHY DO PEOPLE CONTINUE IN THE GLARING LIGHT OF THIS SORT OF EXAMPLE, WHY WOULD THEY CONTINUE TO USE THIS SORT OF THING.
>> I THINK THE QUESTION FOR ME IS LESS WHY DO PEOPLE CONTINUE TO USE IT AND MORE WHY DO COMPANIES CONTINUE TO HAVE CONFUSING TO PARS DATA PRACTICES.
I THINK I WOULD LOVE TO LIVE IN A PLACE WHERE I CAN USE A MAP TO TRACK, OR USE AN APP TO TRACK MY OVULATION AND HAVE IT BE PRESENTED REALLY CLEARLY TO ME AT THE FOREFRONT WHERE THAT DATA CAN HEAD.
I THINK THAT YOU KNOW, ADVOCATES FOR WOMEN'S PRIVACY WHEN THEY CHOOSE TO RECEIVE ABORTION WOULD SAY THAT YOU KNOW IT'S A LOT FOR WOMEN TO KEEP IN MIND.
BUT OF COURSE THOSE MEN STRAWL APPS ARE A WEILL ONE-TO-ONE CONNECTION, IF I HANDED ONE OF THOSE TRACKING APPS EVEN TO THE PERSON SITTING NEXT TO ME, IT WOULDN'T HEADACHE TAKE SHERLOCK HOMES TO FIGURE OUT IF I HAD BEEN PREGNANT IN THE LAST YEAR.
>> SO DO YOU HAVE ANY SENSE OF WHETHER APPS LIKE THAT AND MANY OTHERS THAT TRACK PERSONAL INFORMATION, THAT THEY WOULD BE SWEPT INTO HIPA PROTECTION?
IT JUST SEEMS THAT THAT IS SO UNLIKELY IN THIS ENVIRONMENT, WHICH IS WHY THE BURDEN MAY ACTUALLY FALL ON THE CONSUMER.
>> THE BURDEN DOES FALL ON CONSUMERS, AND THIS IS A BIG PROBLEM IN THE UNITED STATES, IN FACT, EUROPE WHICH HAS STRONGER PRIVACY LAWS, SOME COMPANIES IN EUROPE NO LONGER WANT TO DO BUSINESS IN THE U.S. BECAUSE WE CAN'T COMPLY WITH THEIR LAWS TO PROTECT CONSUMER PRIVACY.
WITH REGARDS TO HIPPA UNFORTUNATELY, HIPA ONLY APPLIES BASICALLY IN CASES WHERE YOU ARE TALKING DIRECTLY WITH YOUR HEALTH CARE PROVIDER.
THAT MEANS ANY APPS THAT COLLECT DATA ABOUT YOU THAT ISN'T YOUR HEALTH-CARE PROVIDER, ARE NOT COVERED.
TO SO TATUM DO YOU HAVE ANY SENSE, YOU KNOW, WE WANT OUR DATA FOR FREE.
AND THAT'S ONE OF THE REASONS WE HAVE ENDED UP IN THIS SITUATION IS THE MONETIZING OF OUR DATA.
DO YOU HAVE A SENSE OF WHAT WE HAVE TO GIVE UP TO GET BACK SOME OF OUR PRIVACY?
>> I MEAN I THINK THAT I WOULD CONTINUE TO SHIFT THE CONVERSATION BACK TO COMPANIES BECAUSE THEY'RE REALLY IN A POSITION OF POWER HERE.
I THINK COMPANIES WOULD HAVE TO GIVE UP THE RIGHT TO HAVE OUR BUSINESS WITHOUT CLEARLY DISCLOSING AT THE BEGINNING OF THAT BUSINESS RELATIONSHIP HOW THEY TREAT OUR DATA, WHAT THIRD PARTY THEY SEND IT TOO AND WHAT USE THOSE THIRD PARTIES MAKE OF IT.
I THINK IF THERE WAS A SHIFT IN THE WAY THAT COMPANIES HAD TO TREAT OUR HEALTH DATA, CONSUMERS -- MAY GO VERY SIMILARLY THAN THEY DO NOW.
BUT COMPANIES WOULD HAVE TO KIND OF RETHINK HOW THOSE AD SUPPORTED MODELS LOOK, THEY WOULDN'T HAVE TO GO AWAY ENTIRELY.
>> IT LOOKS LIKE IT WILL TAKE A LOT OF PRESSURE ON THOSE COMPANIES OR PRESSURE ON THE LAWMAKERS WHO HAVE BASICALLY BEEN WAFFLING ON THIS ISSUE FOR QUITE A LONG TIME.
GEOFFREY YOU FOWLER, TATUM HUNTER, THANK YOU VERY MUCH.
>> YOU BET.
THAT'S IT FOR TONIGHT, BUT COME BACK TOMORROW FOR "TALKING POLITICS."
ADAM REILLY WILL TALK TO THE EDITORS OF A NEW BOOK: "THE POLITICS OF MASSACHUSETTS EXCEPTIONALISM: REPUTATION MEETS REALITY."
PLUS, QUENTIN PALFREY ON HIS RUN FOR ATTORNEY GENERAL, AND WHY HE'S SO PASSIONATE ABOUT KEEPING OUTSIDE MONEY OUT OF THAT RACE.
THAT AND MORE, TOMORROW AT 7:00.
THANKS FOR WATCHING, GOODNIGHT.
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