Health


Monsanto to Pay $289.2M in Landmark Roundup Lawsuit Verdict

11 AUG 2018

A San Francisco jury returned a verdict today in the case of a former groundskeeper with terminal cancer against Monsanto Company, ordering the agrochemical giant to pay $39.2 million in compensatory damages and $250 million in punitive damages for failing to warn consumers that exposure to Roundup weed killer causes cancer.

Dewayne “Lee” Johnson filed the lawsuit (case no. CGC-16-550128) against St. Louis-based Monsanto Co. on Jan. 28, 2016, alleging exposure to the Roundup herbicide he sprayed while working as a groundskeeper for the Benicia Unified School District caused him to develop non-Hodgkin lymphoma (NHL).

On June 18, 2018, his case was assigned to Judge Suzanne Ramos Bolanos for the Superior Court of San Francisco, California. Johnson’s case was the first of its kind to proceed to trial due to his terminal diagnosis.

After eight weeks of trial proceedings, the jury found unanimously that Monsanto’s glyphosate-based Roundup weed killer caused Mr. Johnson to develop NHL, and that Monsanto failed to warn of this severe health hazard. Importantly, the jury also found that Monsanto acted with malice, oppression or fraud and should be punished for its conduct.

Monsanto Co. continues to refuse to warn consumers of the dangers of its multi-billion-dollar product Roundup despite the world’s foremost authority on cancer—the International Agency for Research on Cancer (IARC)—listing glyphosate as a probable carcinogen in 2015.

Lee Johnson is one of more than 4,000 people from across the country to file suit against Monsanto in state and federal courts based on allegations linking Roundup to cancer.

He was represented at trial by Brent Wisner of Baum, Hedlund, Aristei and GoldmanDavid Dickens of the Miller Firm and Mark Burton of Audet & Partners LLP.

Co-lead trial counsel Brent Wisner said today’s verdict was a result of newly-revealed, confidential company documents.

“We were finally able to show the jury the secret, internal Monsanto documents proving that Monsanto has known for decades that glyphosate and specifically Roundup could cause cancer,” Wisner said. “Despite the Environmental Protection Agency’s failure to require labeling, we are proud that an independent jury followed the evidence and used its voice to send a message to Monsanto that its years of deception regarding Roundup is over and that they should put consumer safety first over profits.”

For years Monsanto has claimed that there is no evidence that Roundup causes cancer, yet a mountain of testimony and documents was admitted during the trial. Johnson’s attorneys proved through testimony from Monsanto’s witnesses that company employees “ghostwrote” scientific articles and paid outside scientists to publish the articles in their name.

Internal documents revealed that a scientific advisor hired by Monsanto told the company that past testing for Roundup was insufficient because glyphosate, the active ingredient in Roundup, was tested in isolation without the other chemical ingredients that make up the Roundup formulation.

“Many of these confidential Monsanto documents were unsealed for the first time,” co-lead counsel David Dickens said. “They show that Monsanto knew that its testing was insufficient and that there was a synergistic effect when glyphosate is combined with surfactants which help the glyphosate penetrate both plant and animal cell walls.”

In other now-public documents, Monsanto employees reacted to California EPA’s listing of glyphosate as a carcinogen by calling Californians “liberals and morons,” overwhelming Monsanto like a “zombie movie” that they had to take out one at a time starting with the 2016 presidential election.

In addition to hearing from expert witnesses, the jury listened to heart-wrenching testimony from Lee Johnson and his wife, Araceli.

Araceli recalled for the jury the many sleepless nights Lee spent crying in bed when his children were not around. “He tried to hide it, and I think he tried to show that he was strong,” she said. “He tried to be positive; he wanted to be…for us and the kids.”

After her husband began chemotherapy, Araceli took a second job working 14-hour days to help pay the family’s rising medical bills while still driving her two sons an extra 45 minutes to Napa Valley School District in hopes of providing them better educational opportunities.

When Lee took the stand, he told the jury how scared and confused he was after receiving the news that he had cancer. He also described the times he contacted Monsanto to see if the skin lesions he developed were related to his use of Roundup. When he did not hear back from the company, he continued to use the herbicide.

Most notably, Johnson testified that he would never have used Roundup if he had known of the dangers, and accused Monsanto of concealing Roundup’s safety risks to continue profiting from its billion-dollar herbicide.

“I never would’ve sprayed that product on school grounds or around people if I knew it would cause them harm,” Johnson said during emotional testimony. “It’s unethical. It’s wrong. People don’t deserve that.”

 

 

source/read more: https://www.organicconsumers.org/blog/monsanto-roundup-trial-verdict

http://www.dailymail.co.uk/health/article-6049007/Roundup-cancerous-jury-declares.html

 

Parents of three transgender teens sue Warren County judge to allow name change

5th August 2018

A federal lawsuit claims a Warren County judge suggested a transgender teen was influenced by Caitlyn Jenner and wasn’t sincere about his gender identity when the teen’s parents requested to legally change their minor’s name.

The parents of that 15-year-old teen and two other transgender teens are suing Probate and Juvenile Court Judge Joseph W. Kirby to allow their children to change their legal names from female to male. The parents claim Kirby discriminates against transgender minors in refusing to allow them to select a name that reflects their gender identity.

The plaintiffs in the suit include the parents of one transgender teen Kirby has already ruled against, parents of another teen whose hearing is scheduled for Aug. 14, and a single parent who plans to file a petition for a name change for her transgender teen.

The judge cited the 15-year-old’s age as the reason for refusing the legal name change, but the suit also claims “Kirby suggested that [teen’s] expression of his gender identity was not sincere, but instead was the result of exposure of media coverage of the transition by Caitlyn Jenner.”

The suit cites the judge’s comments about Jenner during exchanges with the teen’s parents and the teen.

Judge to parents: “Well, explain to me the process. When did …. [child’s name] come to you and tell you that she associates herself as a boy?

Father: “It was actually last August.”

Judge: “Kind of when he [Jenner] made the papers and everybody was doing it kind of thing?”

Mother: “No, I don’t believe so.”

Judge: “Was it about the time that it kind of made headlines about a year ago and a half ago?  … Everybody was talking about all the transgender transformations were coming out in the paper?”

Judge to teen: “… How long have you known?

Teen: ” There’s always been a feeling of distress about it as long as far back as I can remember really … But then around when I learned that you can be transgender, I kind of clicked, and you know, that’s what I was upset about – that I wanted to be a boy but I couldn’t.”

Judge: That’s what I was referring to a couple of years ago when it hit the papers, and people were starting, they were identifying themselves or associating themselves with it. Uh, because it was not something that people were talking about.”

Teen: “I guess that never struck me because I’ve known transgender people since I was a kid …”

Judge: “But weren’t they known as cross-dressers back then or did they actually go through the physical? … I just look at Bruce Jenner set the stage nationally for it, maybe even all of the world.”

“The judge failed to consider the evidence presented by the families and doctors that the name change is in the best interest of the teenager and, instead, substituted his own skeptical views,” said attorney Joshua Engel, who filed the suit along with attorney Joshua Langdon.

Kirby’s ruling in refusing the 15-year-old’s petition said the change “was not reasonable and proper and in the child’s best interest at this time.”

 

 

 

source/read more: https://www.wcpo.com/news/local-news/warren-county/parents-of-three-transgender-teens-sue-warren-county-judge-to-allow-name-change

Dangerous Gardasil drug should be banned in US (An Aunty’s letter)

25th July 2018

To the editor

My 11-year-old great niece was a happy, healthy child until — upon the recommendation of her pediatrician — she received a Gardasil shot. The next day she woke up with bruises all over her body. Blood work found ITP — a rare blood disease that can be fatal. She bled from her mouth and nose; she was put into the Intensive Care Unit when the doctors feared that she would bleed on her brain and die.

A week of IVIG treatments were unsuccessful, and she was discharged. The next month she had chemo treatments — 10 hours of infusion each time. Today — 6 months after her vaccination, her blood platelets have gone from a low of 100,000 to 132,000 (150,000 to 400,000 is normal).

Her pediatrician filed a report with the Centers for Disease Control and Prevention about the effects Gardasil had on her; her doctor recommended that she not get the second dose. Believe it or not, Gardasil is still being promoted in America as safe, effective and vital for ages 9 to 26.

Very few parents know that Gardasil has come under intense scrutiny from medical professionals around the world in the past few years. Very few know that the Federal Drug Administration reported 85 deaths from Gardasil between June 2006 and June 2013. Very few have ever watched the many YouTube videos that reveal the deaths, paralysis and serious side effects Gardasil has brought to many young women all over the world. Very few have searched on websites where renowned doctors and medical journals question everything about Gardasil.

Dr. Dianne Harper, one of 50 HPV experts in the world, said Gardasil is neither safe nor effective. She told CBS it is essentially useless. Dr. Chris Shaw — professor at the University of British Columbia — said Gardasil “is a vaccine that’s been highly marketed, the benefits are overhyped, and the dangers are underestimated.” The American College of Pediatricians has linked Gardasil to premature menopause in girls. Studies in medical journals like Pediatrics, Cancer Epidemiology and Human Vaccines & Immunotherapeutics conclude that doctors have issues with Gardasil.

Perhaps most telling are the revelations of Dr. Bernard Dalbergue, a former pharmaceutical industry physician with

Gardasil manufacturer Merck. In an April 2014 interview published in Principes de Sant (Health Principles) he said, “The full extent of the Gardasil scandal needs to be assessed: everyone knew when this vaccine was released on the American market that it would prove to be worthless. I predict that Gardasil will become the greatest medical scandal of all time because at some point in time, the evidence will add up to prove that this vaccine has absolutely no effect on cervical cancer and that all the very many adverse effects which destroy lives and even kill, serve no other purpose than to generate profit for the manufacturers. Gardasil is useless and costs a fortune!”

Gardasil has been banned in Japan. The people of Spain are crying out for its removal from their country. Sadly, it is still used in 100 countries, including this great United States of America.

Chris Dutil,

Stockbridge

 

 

 

source/read more: https://www.berkshireeagle.com/stories/letter-dangerous-gardasil-drugshould-be-banned-in-us,544073

Doctors Give Patients 11 Seconds To Explain Reason For Visit Before Interrupting

21 July 2018

Ever feel like your doctor is in a rush to get you out the door when you come in for a visit? You’re not just imagining things. A new study finds physicians give a patient an average of just 11 seconds to describe their issue before cutting them off.

Researchers from the University of Florida determined that for all the waiting we do after we arrive at a medical practitioner’s office, its the doctors who seem to have the least amount of patience. The study showed that just a third of physicians give patients adequate time to explain why they’re there.

“Our results suggest that we are far from achieving patient-centered care,” says study co-author Naykky Singh Ospina in a release, adding that medicals specialists proved to be in the biggest hurry, compared to primary care physicians.

Singh Ospina, who led the research team, sought to examine the flow of conversation between clinicians and patients, and more importantly, see how viable it was for the most important person in the room — the patient, of course — to lead the discussion. Her researchers secured videos of consultations that were filmed in clinics across the U.S. as training sessions for the physicians between 2008 and 2015.

The team specifically analyzed the first few minutes of the 112 consultations, looking to find out how frequently doctors let the patients dictate the conversation through inquiries such as “Tell me what brings you in today,” or “What can I do for you today?” If patients were given the opportunity to set the agenda, the researchers then timed the responses to see how long they could speak before the doctor interrupted them.

The results showed that just 36% of doctors ask questions that allowed patients to set the agenda, but two-thirds (67%) of those patients were interrupted after responding. Researchers calculated the doctors cut patients off 11 seconds on average into a response, while those who were able to describe their issue in full needed only six seconds to do so.

“If done respectfully and with the patient’s best interest in mind, interruptions to the patient’s discourse may clarify or focus the conversation, and thus benefit patients,” says Singh Ospina. “Yet, it seems rather unlikely that an interruption, even to clarify or focus, could be beneficial at the early stage in the encounter.”

The results also showed that only 20% of specialists give patients the opportunity to describe their issue at the onset of a consultation, though it’s certainly possible because they’ve already been briefed on a patient’s problem through a referral or a nurse’s inquiry. Conversely, half of primary care physicians reviewed in the study inquired about a patient’s agenda off the bat.

 

 

source/read more: https://www.studyfinds.org/doctors-give-patients-11-seconds-describe-visit/

 

Full study here: https://link.springer.com/article/10.1007/s11606-018-4540-5

My Health Record: the Government wants to access your data until 30 years after you die

16th July 2018

Unless you opt-out by mid-October, the Federal Government will create an online record of your health details that it can access for the rest of your life and beyond – even if you ask for it to be deleted.

The Federal Government has budgeted more than $370 million to make digital health records for all Australians by the end of the year.

But privacy advocates are warning people to opt out of the database and IT specialists say it’s impossible to completely safeguard the information.

Every Australian will soon have a My Health Record — an online summary of their health information — unless they opt out over the next three months.

From Monday, Australians will have until October 15 to tell the Government they don’t want one. Otherwise, a record will automatically be created.

The project aims to give patients and doctors access to timely medical information — test results, referral letters and organ donation information, for starters — but there are concerns about the safety of some of our most personal, sensitive data.

We asked for your questions about the project on social media, and they ranged from police access to the platform’s cybersecurity.

The ABC sat down with Tim Kelsey, the head of the Australian Digital Health Agency (ADHA) and the man in charge of the initiative, to get them answered.

The way the record works

As a patient, how can I know if my My Health Record information is being maintained by my doctor?

You can choose to opt out and have no My Health Record.

But once you have one, doctors can upload health information into it unless you ask them not to.

When you see a doctor, you can discuss adding (or not) documents such as an overview of your health, a summary of prescribed medications and referral letters.

Remember, it’s not a comprehensive picture of your health — it will only contain what you and your doctors choose to upload, and will depend on the quality of those records.

When you first access the system, you’ll be asked to decide whether you want two years of Medicare Benefits Schedule, Pharmaceutical Benefits Scheme, Australian Immunisation Register, and Australian Organ Donor Register data to be uploaded.

But if your doctor accesses your record first before you make the selection yourself, this data will be uploaded automatically — unless you’ve opted to have no record at all.

If you want, you can delete or restrict access to those documents later.

Not all Australian hospitals and health services are connected to My Health Record yet, so that’s something to check during your next visit.

When I get a prescription, how do I know whether I need to ask to make an update to my My Health Record? Does this vary by provider?

Doctors can upload information about prescribed medications, but as discussed above, it’s worth discussing this each time you see your doctor.

What happens to your My Health Record after you die?

My Health Record information will be held for 30 years after your death. If that date isn’t known, then it’s kept for 130 years after your birth.

Will any private health insurance companies have access?

Insurers shouldn’t be able to access your record — it’s reserved for people who work for a registered healthcare provider and who are authorised to provide you with care.

There are plans to use aggregated, anonymised My Health Record data for research and other purposes — this is known as “secondary use”.

“My Health Record information can be used for research and public health purposes in either a de-identified form, or in an identified form if the use is expressly consented to by the consumer,” a Department of Health spokesperson said.

Currently, users of the platform can tick a box on the web portal to opt out of secondary use.

Secondary uses must be of public benefit and cannot be “solely” commercial, and insurance agencies will not be allowed to participate.

However, “the impact of this exclusion” will be considered when the Department of Health’s framework governing secondary use of My Health Record data is reviewed, according to the framework document.

Australian organisations (and some overseas, in certain circumstances), including Australian pharmaceutical companies, will be able to apply to access My Health Record data for approved secondary purposes.

“We don’t expect any data to flow until 2020,” Mr Kelsey added.

The opt-out period

How can I opt out?

There are three key ways:

  • By visiting www.myhealthrecord.gov.au and opting out using the online portal.
  • Over the phone by calling 1800 723 471.
  • Or on paper by completing a form and returning it by mail. Forms will be available in 2,385 rural and remote Australia Post outlets, through 146 Aboriginal Community Controlled Health Organisations and in 136 prisons.

What happens to the people who end up with a My Health Record, and then decide to opt out?

If you don’t opt out between July 16 and October 15, then a record will be automatically created for you.

After October 15, there will be a “one-month reconciliation period” before new My Health Records are registered. These new records will be created mid-November.

You can then cancel that record, but the data it contained will still exist (although inaccessible to you or health providers) until 30 years after your death.

Is a record automatically generated if a doctor uploads a document during the opt-out period, even if you did not create one yourself?

According to the ADHA, doctors can’t upload any clinical documents to the My Health Record system unless the patient record exists.

What about children who aren’t born yet — can they opt out?

After the opt-out period, newly eligible healthcare recipients, such as immigrants to Australia and parents of newborn children, will be given the chance to elect not to have a My Health Record as part of their Medicare registration.

Protection of your data

Which service provider will manage the infrastructure to ensure it isn’t vulnerable to a cyber-attack?

The platform was built by the technology provider Accenture, however the ADHA is starting discussions about “re-platforming” it.

Independent third parties audit the system’s security and undertake penetration testing, according to Mr Kelsey, but security experts warn that it’s impossible to make any online database entirely bullet proof.

Remember too, that documents created or downloaded by your doctors may be stored in their local IT system too and depend on that system’s security.

If a doctor downloads files from My Health Record, what’s to stop her from sharing those files within the practice?

By default, your online documents will be accessible to your healthcare providers.

If you have privacy concerns, you can log onto My Health Record and restrict who sees it:

  • You can set a Record Access Code and give it only to healthcare professionals you want to access your record.
  • If you want to restrict certain documents, you can set a Limited Document Access Code.

These controls may be overridden in an emergency.

As mentioned above, if a document is removed from the My Health Record system, it’s beyond the reach of your access controls.

If a GP were to allow another staff member to access a record, what is the potential punishment?

If someone accesses your My Health Record without legal authorisation and the person “knows or is reckless to that fact”, criminal and civil penalties may apply.

Where can users see information about who has accessed their record?

My Health Record users will be able to see who has looked at their record by checking its access history online.

They’ll be able to see when it was accessed, which organisation accessed it and what was done — documents being added, modified or removed, for example — but not the individual doctor who accessed it.

You can also set up an email or SMS alert for when a healthcare organisation accesses your record for the first time.

The privacy commissioner recommends checking regularly for unexpected or unauthorised access. You can call the ADHA on 1800 723 471 if you think something’s gone wrong.

Several apps can connect to My Health Record. How will the ADHA ensure they are secure?

Apps such as Healthi and Health Engine, which recently ran into trouble, are authorised by the ADHA to “show” people their health record.

According to Mr Kelsey, third party app developers can only display your My Health Record — “at the moment, it’s view-only” — and cannot store that data.

OPT OUT HERE: 1800 723 471.  https://optout.myhealthrecord.gov.au/pext/optoutextweb/views/getStarted.xhtml

 

source/read more: http://www.abc.net.au/radio/programs/am/my-health-record-data-access-for-30-years-after-death/9989172

and

http://www.abc.net.au/news/science/2018-07-15/my-health-record-questions-answers-security-privacy-police/9959622

 

Orlando International Airport to scan faces of US citizens

21st June 2018

Florida’s busiest airport is becoming the first in the nation to require a face scan of passengers on all arriving and departing international flights, including U.S. citizens, according to officials there.

The expected announcement Thursday at Orlando International Airport alarms some privacy advocates who say there are no formal rules in place for handling data gleaned from the scans, nor formal guidelines on what should happen if a passenger is wrongly prevented from boarding.

Airports in Atlanta, Boston, Chicago, Houston, Las Vegas, Miami, New York and Washington already use face scans for some departing international flights, but they don’t involve all international travelers at the airports like the program’s expansion in Orlando would. The image from the face scan is compared to a Department of Homeland Security biometric database that has images of people who should be on the flight, in order to verify the traveler’s identity.

U.S. citizens at these airports can opt out, but the agency “doesn’t seem to be doing an adequate job letting Americans know they can opt out,” said Harrison Rudolph, an associate at the Center on Privacy & Technology at the Georgetown University Law Center.

U.S. citizens at the Orlando airport will be able to opt out just like at the other airports if they don’t want to provide their photograph, Jennifer Gabris, a spokeswoman for the U.S. Customs and Border Protection said in an email. However, a notice about a possible rule change for the program states that “U.S. citizens may be required to provide photographs upon entering or departing the United States.”

The Orlando announcement marks a step up in the scope of the face scan program, Rudolph said.

“We’re not talking about one gate,” he said. “We’re talking about every international departure gate, which is a huge expansion of the number of people who will be scanned. Errors tend to go up as uses go up.”

Orlando International Airport had about 6 million international passengers in the past year.

 

 

source/read more :https://apnews.com/eade4e6efbf442328b0e1eefabd98f05

 

Mosquitoes Might Like Your Smell, But They Remember Your Swat, Study Finds

20th June 2018

Many states, especially those in the South, often refer to the mosquito as their “state bird,” a dry joke making light of the high prevalence of the bothersome bug. Whether it’s fearing the itchy welt or worrying about contracting a virus, many of us go to extremes to keep the pests away. You might think that bug spray or citronella candles are the best repellants, but a recent study found that swatting at mosquitoes may actually help them learn to stay away from you.

The study, conducted by researchers at Virginia Tech, confirmed what scientists already suspected: that mosquitoes remember the taste and smell of human blood and often pick on individuals whose blood is “sweeter” to them. That’s why your friend had a slew of bug bites during that last camping trip, but you only emerged with just a few. But the finding changed when researchers observed their behavior around people who shooed them away more; that is, mosquitoes, may remember the smell of sweeter blood, but they also remember the defensive measures taken against them.

The authors found that the brain chemical dopamine plays a role in a mosquito learning which hosts to attack and which to avoid. So while a person’s blood can be remembered as particularly delicious, so can their ferocious swatting techniques.

Clément Vinauger, assistant professor of biochemistry, and Chloé Lahondère, a research assistant professor, demonstrated that mosquitoes learn which individuals to attack and which to leave alone with aversive learning. They trained female Aedes aegypti mosquitoes to associate certain odors, such as human body odor, with unpleasant vibrations and shocks.

After the training, the mosquitoes were put into an insect flight simulator, where they had to fly upwind and choose between the human odor and a control odor. The mosquitoes, even though before the training they preferred human odor, avoided it in the test.

Using sophisticated tools like CRISPR gene editing and RNAi, the scientists were able to isolate dopamine as the main mediator in mosquito adverse learning.

“Unfortunately, there is no way of knowing exactly what attracts a mosquito to a particular human — individuals are made up of unique molecular cocktails that include combinations of more than 400 chemicals,” explains Lahondère in a release. “However, we now know that mosquitoes are able to learn odors emitted by their host and avoid those that were more defensive.”

 

 

 

source/read morehttps://www.studyfinds.org/mosquitoes-remember-human-smells-swats-study-finds/

Agribusiness giants Bayer and Monsanto clear US regulatory hurdles for $US66b mega merger

18th June 2018

A multi-billion dollar merger between the agribusiness giants Bayer AG and Monsanto has been approved by the US Department of Justice.

It has been two years since the companies announced the $US66 billion ($88 billion) proposal, with the US anti-trust regulator’s approval the last major regulatory step the deal needed before being officially inked.

Both companies sell a range of crop protection products (pesticides) and crop seeds in Australia, while Bayer also manufactures plastics, medical and veterinary products.

Together the companies control around 80 per cent of the global vegetable seed market, with Australia holding around three per cent.

The original terms of the proposal would have created a monopoly in the US herbicide-resistant cotton and canola seed market, but on Tuesday night the US Justice Department said it had worked through those issues during its year-long investigation into the deal.

“The Department of Justice announced today that it is requiring Bayer AG to divest businesses and assets collectively worth approximately $9 billion in order to proceed with its proposed $66 billion acquisition of Monsanto Company,” it said in a statement.

It is the largest-ever divestiture ordered by the Department of Justice, and includes anything in Bayer’s suite of products that already competes directly with a Monsanto product, including canola, cotton, soybean and vegetable seeds, as well as Bayer’s herbicide business — a competitor of Monsanto’s glyphosate herbicide Roundup.

Bayer already announced it would sell many of these assets to BASF, a fellow German company, and the largest chemical company in the world.

There is also a requirement for divestitures in both companies’ seed treatment businesses to “remedy competitive harm” from the overlap.

“Without the agreed-to divestitures, the proposed merger would likely result in higher prices, lower quality, and fewer choices across a wide array of seed and crop protection products,” the Department of Justice’s statement said.

“The merger also threatened to stifle the innovation in agricultural technologies that has delivered significant benefits to American farmers and consumers.”

No local competition concern

Australian farmers rely on a wide range of products from both companies, especially broadacre, vegetable and cotton farmers.

Many of the seeds, seed treatment, and pesticide products they use are sold through one of the companies.

The Australian Competition and Consumer Commission said in March it would not oppose the merger because of the divestments ordered by European, Canadian and US competition regulators.

 

 

 

source/read more : http://www.abc.net.au/news/2018-05-30/bayer-monsanto-merger-gets-green-light-from-us-regulator/9814702

This nation faces a DNA dilemma: Whether to notify people carrying cancer genes

18th June 2018

Sometime in the future, U.S. researchers will be able to press a button and reliably identify the thousands of people who carry cancer-causing genes, including those that trigger breast cancer.

In Iceland, that day is already here. With a relatively uniform population and extensive DNA databases, Iceland could easily pinpoint which of its people are predisposed to certain diseases, and notify them immediately. So far, the government has refused to do so. Why? Iceland confronts legal and ethical obstacles that have divided the nation and foreshadow what larger countries may soon face.

Since the late 1990s, tens of thousands of Icelanders have agreed to contribute their DNA to a public-private science projects aimed at delivering medical breakthroughs. But in contributing their DNA — and in many cases, their medical records — these people never explicitly consented to be notified of personal health risks that scientists might discover.

Icelandic regulators have determined that without that explicit consent, neither the government nor private industry can notify people of these risks.

“That is utter, thorough bulls–t,” Dr. Kári Stefánsson, a world-renowned Icelandic neurologist and biotech leader who has been at the center of the nation’s DNA debate, told McClatchy in an interview in his Reykjavík office. “There is a tradition in American society, there is a tradition in Icelandic society, to save people who are in life-threatening situations, without asking them for informed consent. Should there be a different rule if the danger is because of a mutated gene?”

In Iceland more than anywhere, the promises of technology and “personalized medicine” are clashing with concerns over privacy and medical norms. In the United States and elsewhere, scientists and doctors will soon have the capability to tell people about their predispositions to diseases. But at what age should they be told, and with what caveats? Should researchers only tell individuals about diseases that can be prevented — such as with a mastectomy — as opposed to those they can’t stop, such as Alzheimer’s? And what if people don’t want to know?

source: https://www.mcclatchydc.com/news/nation-world/article213014904.html