Biobanks
Produced by RTS
Ref. 7961
VO
00:00:03,280 --> 00:00:06,120
-Kinda's a worried and angry mom. She thought she was doing what's
best for her child. She finds herself in the middle of a case involving
stem cells of her baby's umbilical cord blood.
KINDA
00:00:17,120 --> 00:00:44,040
-I thought the scientific research would progress in the future
and that it might be useful in case of chronic illnesses. I thought it would be a service
available to my daughter. I asked my doctor and I received some suggestions
for several companies. And that's how I made my decision.
VO
00:00:44,240 --> 00:00:46,600
-Immediately after birth, one can obtain a sample of fetal-placental blood. The swab is painless.
The stem cells it contains can produce all the cells found in the blood and bone marrow.
They are used to treat acute childhood leukaemia or other blood diseases. The transplants of these cells
have been practiced in university hospitals for 30 years. As early as 2000, private companies
made a business in collecting and storing these cells.They present themselves as a casualty insurance
and make the parents feel guilty for not subscribing. This couple had a good reason to do so
for their three children.
Pierre
00:01:44,000 --> 00:01:47,280
-I suffered from cancer at a young age. I've seen a lot of people, often at a very young age,
waiting for transplants. I was hoping to get a guarantee that my kids would have
less to worry about than some whose distress I could see with their cords preserved
in case of need.
VO
00:02:04,880 --> 00:02:29,200
-They made their choice for a Swiss-based company whose name was Salveo,
before they changed their name to become Cryo-Save. In doctors' waiting rooms,
advertisements for private stem cell banks lie between the
pro-breastfeeding flyers and those about perineal gym for new moms.
That's how Rachel chose Cryo-Save.
RACHAEL:
00:02:29,400 --> 00:02:53,720
-I found these brochures in a clinic, at the gynaecologist’s office. Nurses and midwives
of the clinic clearly told us that storing stem cells could help in case of a serious illness.
I was under the impression that these companies were
regulated in Switzerland.
VO
00:02:53,920 --> 00:03:11,520
-Everything looked serious. Before the birth, Cryo-Save sent a sampling kit
that moms were to take with them at the clinic. The cells were to be stored
in liquid nitrogen for 25 years. The premises of this biobank
were located in an industrial zone of the canton of Geneva.
JULIANNE
00:03:15,120 --> 00:03:18,720
-The company was Swiss and close by, it was important to us.
RACHAEL
00:03:21,120 --> 00:03:36,960
-They were nice on the phone. They provided me with
the desired information. They told me over and over again that
the samples would be stored in Switzerland, that was the most
important thing to me. And I believed them.
KINDA
00:03:37,160 --> 00:03:58,920
-In general, I'm wary of private companies, because I know that
profit always comes first, for any corporation. In particular,
when it comes to health, I don't trust private companies. But, because it was in Switzerland,
I thought "I'm safe here."
00:03:59,120 --> 00:04:00,000
Can I have the ice cream?
00:04:00,000 --> 00:04:01,400
No, I'm not giving
you the ice cream!
00:04:01,600 --> 00:04:03,080
-Don't you want to?
VO
00:04:03,280 --> 00:04:34,200
-All these parents had no idea they would one day regret that choice. It all started in the summer of 2019
with rumours of bankruptcy. In September, in a seemingly innocuous message,
in a newsletter, Cryo-Save announced to its customers the company had been bought by
another biobank based in Poland. Parents concluded that the samples
had been smuggled out to Poland too. Concern was growing over
the seriousness of Cryo-Save.
RACHAEL
00:04:34,400 --> 00:05:02,480
-I started doing research on the history of Cryo-Save and regulations in Switzerland.
I questioned the Swiss authorities and, in the face of their silence
or standard answers, I decided to reach out to
other parents. Parents who were in the same situation as me in order to come together
and to decide on the future of our samples.
VO
00:05:02,680 --> 00:05:27,280
-In December 2019, the families that Rachel found, met with a lawyer
specializing in health law. The bankruptcy of Cryo-Save
was confirmed. Parents find out that the samples
may never have been stored in Switzerland and the contracts
signed were highly inconsistent.
SARA DOUSSET
00:05:27,480 --> 00:06:13,160
-We have a significant number of contracts with quite different content, sometimes signed
with different entities. In some families, there are as many different contracts
as there are children. In this context, families can't figure it out. Some contracts state
that it is forbidden to transfer family data externally without the consent of the family
and some don't. Normally, you have to go before a civil judge and plead infringement
or termination of the contract to request the return of the cells.
Here it's no longer possible, because of the bankruptcy.
VO
00:06:13,360 --> 00:07:05,120
-In this case, nothing's normal. If Cryo-Save had transferred its storage activities
to a subcontractor in Poland, why did the police seal the premises in Geneva?
What's left behind those doors?
A Polish company, PBKM FamiCord, contacts Cryo-Save customers
and tells them that it now has Cryosave's liquid nitrogen tanks. It sends them these images
with temperature monitoring of their journey across Europe.
Without problems or checks, these vats went all the way to Warsaw. Families are flabbergasted.
Rachel discovers that a huge international financing package is hiding behind Cryo-Save.
RACHAEL
00:07:05,320 --> 00:07:37,080
-It's very complex. All the storage part went to Poland, in this PBKM laboratory
that belongs to FamiCord.There's a second part, where there's the database
and the names of the websites, that have gone to other companies.
These are companies which are mostly in the United States.
A company opened in Geneva to recover the database containing all our medical data.
VO
00:07:35,560 --> 00:08:14,240
-Families discover that there are other victims in several European countries.
One question is on evryone's lips: Are their babies' stem cell samples in Poland?
And are they in a good condition? S.Logean is a journalist in the Swiss daily newspaper Le Temps. Contacted by the victims,
she investigated the case. In December 2019, she decides to go find out
where these precious cells are located. With photographer Eddy Mottaz,
she reached the outskirts of the Polish capital.
SYLIVIE LOGEAN
00:08:14,240 --> 00:09:03,600
stem cells are in Warsaw's lab. All the vats, seem to be Cryo-Save's.
The self-adhesive signs that were on the vats have been removed.
But you can see clearly the indication "Cryo-Save Labs".
It gives the indication that these are Cryo-Save's vats . In total, there are
55 vats stored in the PBKM FamiCord warehouse. In addition, there is more
than 630,000 units of cord blood stored there. In total, there are about
250'000 families in Europe. But in Switzerland, we don't know
how many families are affected.
VO
00:09:03,800 --> 00:09:05,720
-Because the information is missing. The Polish company
must scan each sample to take inventory. Because the Cryo-Save documents
are unreliable. During S.Logean's investigation..,
42% of samples had been checked, with an unpleasant surprise in store.
SYLVIE LOGEAN
00:09:24,800 --> 00:09:25,960
-Already, at this point it looked like about 20,000 scanned samples
did not have a match in the database provided by Cryo-Save.
VO
00:09:37,120 --> 00:09:40,880
-So these 20,000 samples
are lost, orphans?
SYLVIE LOGEAN
00:09:41,080 --> 00:10:05,120
-So, it's hard to say FamiCord also received nine documentation containers
from Cryo-Save. It's millions of pages of documents. The leaders of FamiCord
could start a search in these documents to try and find the owners of the samples.
VO
00:10:05,320 --> 00:10:08,840
-Hopeless parents are concerned about the use of their children's DNA
and associated medical data.
RACHAEL
00:10:17,920 --> 00:10:37,320
-Since our samples have crossed borders, from Switzerland to Poland
without any problems or supervision, there is a concern, to this day, that there may
be a bankruptcy of this laboratory in Poland and that these stem cells
are resold to laboratories around the world.
VO
00:10:37,520 --> --> 00:10:48,960
-All scenarios are possible: we have laid out these fears to a human tissue specialist
and biobanks, who is a law professor and doctor.
PROF. PHILIPPE DUCOR
00:10:49,160 --> 00:11:01,960
-In Switzerland, you can't sell those cells. I don't think that
reputable organisation would acquire that kind of thing given the context.
VO
00:11:02,280 --> 00:11:04,600
-Reputable organisation, wouldn't. But, for those
who are unscrupulous, 630'000 samples with medical data of 250,000 families,
it can be very tempting. If it's worthless, what's the point of PBKM,
who took over the business of Cryo-Save?
Why take the legal risk and financial aspects of the case?
SYLVIE LOGEAN
00:11:26,960 --> 00:12:03,720
-That's the right question. The director of FamiCord explained that Cryo-Save was struggling
to pay suppliers. To prevent sample damage. FamiCord agreed this subcontract
to avoid considerable image damage for the entire industry. If the samples
had been damaged, not only would it have been very
deleterious to this industry, but one could also have imagined authorities decide to simply prohibit
this activity.
VO
00:12:04,960 --> 00:12:07,040
A well-founded fear: France has never authorized the activity of these private banks.
Belgium has banned it for lack of customer protection plans. in the event of
disastrous management, or embezzlement or bankruptcy.
In Switzerland, these storage companies of human tissue can offer
their unfettered services.
PIERRE
00:12:29,800 --> 00:12:46,560
-I imagined that anything concerning the health of children
was well regulated and supervised. In Switzerland, one could imagine that it was controlled,
like most everything else is. It is a total desert.
KINDA
00:12:46,760 --> 00:13:06,920
-One of the things I'm hoping for is that this case leads to an investigation in Switzerland.
Parliament could have a discussion to find out if the legislation is sufficient, if laws need to be reviewed
or whether to introduce a new regulation.
VO
00:13:07,120 --> 00:13:10,720
-All the difficulty is to regulate an activity which is totally private and stems
From the freedom of trade. The status of human biological material
is also very special.
PROF. PHILIPPE DUCOR
00:13:21,080 --> 00:13:46,320
-You have to be careful with the rules of public law. They must be motivated
by a genuine public interest, in this case, public health. If we interfere in any area...
reserved for private law, many will express themselves by saying: "This is an authoritarian state."
It's a delicate balance and, in this case, it's respected.
VO
00:13:46,520 --> 00:13:59,240
-Little hope for the parents: last January,
the Geneva Public Prosecutor's Office has filed charges
against Cryo-Save on request of the Federal Office of public health.
VO
00:14:07,040 --> 00:14:09,080
-January 2020. The Cryo-Save facility is empty. The locks have been changed.
Banks of stem cells can disappear quickly. For parents, it's not
a business like any other.
RACHAEL
00:14:24,800 --> 00:14:59,800
-It really feels like we have been fooled. We did this to protect
our children from diseases. And it feels like these companies are lying to us.
They lie to us about what we can do with the stem cells now, let alone in the future.
They're lying to us about storage of these stem cells.
And in fact, we're realizing that for these companies, it’s a huge business. And the medical side, for now,
is neglected.
PIERRE
00:15:00,000 --> 00:15:03,360
-The sum was well calculated. Affordable, but consistent.
JULIANNE
00:15:06,920 --> 00:15:19,440
-Total per child was 2'600 frs. We spent more than 6,000 francs...
for this scam.
VO
00:15:19,440 --> 00:15:37,960
-Parents paid more than 4'000 frs per child in one go for 25 years' storage.
It's risky.
There is no guarantee the sustainability of these companies.
Furthermore, these companies play skillfully with words so they do not seem like lies
PROF. KARL HEINZ KRAUSE
00:15:43,520 --> 00:16:06,280
-I've looked at several of these commercials. We find everything.
Some of them are on the verge of lying, others are pretty solid.
But in general, most of these promises are based on hope and not on the science.
VO
00:16:06,480 --> 00:16:09,560
-As a research specialist on stem cells, Karl-Heinz Krause can judge their potential.
PROF KARL HEINZ KRAUSE
00:16:16,520 --> 00:16:22,440
-You can lie without saying things that are completely untrue.
But we're giving partial information and we amplify it. The person who is not an expert
is gonna figure out the wrong thing.
VO
00:16:33,240 --> 00:16:35,800
-The most twisted statement concerns
the number of children treated.
PROF KARL HEINZ KRAUSE
00:16:39,080 --> 00:17:27,440
-There, they say that more than 30,000 transplants of stem cells are derived from
umbilical cord blood. The parents, what they're gonna believe,
is that we took these stem cells of the umbilical cord, and we
transplanted them to the child... who it was meant for.
But that's not it at all. These are public banks where the umbilical cord
is kept for everyone. If we're looking for a donor and you can see it's a good match,
we take the umbilical cord of another child to save a child
with leukemia. This is the case for more than 99% of umbilical cord transplants.
VO
00:17:28,480 --> 00:17:30,800
- Effectively, a child with leukemia, will not have their own cells
Transplated at the risk of reinjecting them with cancer cells. In addition,
someone else's stems are necessary to fight cancer. Hence the need for public stem banks, such as
at the HUG.
DR YORDANKA TIREFORT
00:17:51,520 --> 00:18:38,680
-In the cases of
hemato-oncological diseases, like leukemia and lymphoma, cell transplantation
not only allows to rebuild the marrow But also, these stem cells
have a therapeutic effect.
VO
With the graft-versus-host effect,
the donor cells identify malignant cells escaping the
chemotherapy and eliminate them. If a child is sick,
we're looking for a donor among his loved ones:
fresh cells are always preferred. Otherwise, we're looking for the best
frozen sample compatibility within the international network
of public banks.
DR YORDANKA TIREFORT
00:18:39,560 --> 00:18:43,600
-We have over 750,000 units of public cord blood in the global register
Available for all patients.
VO
00:18:50,800 --> 00:18:54,440
-To give the cord blood
to a baby, the baby has to be delivered
at the maternity ward in Baselor Geneva, which are home to
the country's two public banks.
DR YORDANKA TIREFORT
00:19:01,360 --> 00:19:06,640
-We have about 2,000 units of stored cord blood
and about 50 patients have been grafted with our products
in Geneva, Switzerland, and all over the world.
VO
00:19:15,280 --> 00:19:31,120
Self-preservation is therefore not
absolute assurance.And there is no disease
that it would be impossible to treat without their own cells
of the patient. But the existence and role
of state-owned banks...are unrecognized.
RACHAEL
00:19:31,320 --> 00:19:32,600
-I'm surprised that, before I gave birth, I hadn't been informed that they
existed, because I could have entrusted them with my stem cells
so that it could serve everyone.
VO
00:19:44,600 --> 00:19:48,560
-Gynecology clinics and practices only adveritse commercial stem cell banks.
Not a word about public banks. What is the responsibility of these doctors?
PROF PHILIPPE DUCOR
00:19:58,480 --> 00:20:30,840
-As soon as you take the sample of the stem cells, it
represents a medical act, the consent rule enlightened must apply also with regard to
of the assisting physician for cell harvesting. Marketing of this kind of service is all about
evoking emotions. As such, doctors
should be very selective when it comes to advertising
pamphlets in their office.
VO
00:20:31,040 --> 00:20:54,640
-And a critical eye on these business enterprises remunerating them
for this gesture. The clinics haven't helped
parents inquiring about Cryo-Save
during the scandal.
Victims of fraudulent bankruptcy remain alone to decide what to do
with their samples.
RACHAEL
00:20:54,840 --> 00:21:10,520
-Our priority is indeed to recover the samples
stored in Poland, to bring them back to Switzerland
or destroy them. We're hoping we can put them
in a public bank in Switzerland.
VO
00:21:11,400 --> 00:21:15,040
-Can a public bank
use these samples?
DR YORDANKA TIREFORT
00:21:16,000 --> 00:21:19,000
-Unfortunately not: university transplant centres, would not take the risk
of transfusing unknown stems, where quality and safety
are not guaranteed.
VO
00:21:28,560 --> 00:22:00,080
-But the good news is,
that no child will be endangered because their stem cells are lost.
Then there's the other side of the promise of these private actors:
regenerative medicine. Again, the advertising exaggerates the possibilities.
Besides.., in aging research, today we use other stem cell sources.
PROF KARL HEINZ KRAUSE
00:22:00,280 --> 00:22:04,240
-Layer cells
Of the umbilical cord are not useful
for these applications. They remain valid
for the marrow transplant, but otherwise,
other cells are better.
VO
00:22:15,760 --> 00:22:19,280
-Vannary Tieng Caulet is
a specialist of stem cells
and regenerative medicine.
VANNARY TIENG CAULET
00:22:23,720 --> 00:22:55,880
-Induced stem cells recreated artificially in a laboratory, were created from
skin biopsy. We schedule them to come back
in its embryonic state. That gives us, indefinitely, a sufficient number of cells.
In the embryonic stage, you can them apart into different tissues of the body.
We know we can recreate any organ from a piece of skin.
VO
00:22:56,080 --> 00:23:58,040
-The researcher is developing neural stem cells and also cartilage.
Others work on nerve cells or the heart muscle.
Several of these cellular biotherapies are very close
to move from animal to human clinical trials. Incubators, rather
than liquid nitrogen, seem to be the future of regenerative
medicine.