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Column: In the middle of a race to cure COVID, the medical file is ‘not kept secret as we think’

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Column: In the middle of a race to cure COVID, the medical file is 'not kept secret as we think'

To hear President Trump say, the COVID-19 vaccine will arrive soon.

“We think we will have a vaccine by the end of this year and we are trying very hard,” he said to Fox News last week.

While many health experts say that ambitious goals are unrealistic – most say vaccines for widespread use are unlikely until the earliest next year – Trump’s comments raise some interesting questions.

How will researchers recruit subjects for the COVID-19 vaccine or healing test? Will scientists wait for infected or interested people to contact them? Will they use other ways to find suitable research participants?

If the latter, it seems fair to wonder how confidential our medical records are. There is no faster way to recruit research subjects than by reading people’s health service files and seeing who qualifies.

Joel Engel, a resident of Westlake Village, suspected this happened to him a few days after he received two phone calls asking if he wanted to enroll in UCLA’s sleep study.

Engel, a writer, said he was treated at a UCLA facility about five years ago.

“Callers say they need people of a certain age in good health,” he told me. “I asked how they knew my age and condition. I can’t get a straight answer. “

Engel’s concern is that UCLA violates federal medical privacy law Health Insurance Portability and Accountability Act, which prohibits unauthorized access to people’s medical information.

“How else do they know to call me?” he wondered.

That’s a fair question.

And with the global pandemic raging, maybe all Americans should wonder if their medical records are as confidential as they thought.

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Are we all a fair game for research given the extraordinary circumstances?

Short answer: No. And yes.

“You can’t just fish around people’s medical records,” said Arthur Caplan, a professor of bioethics at New York University. “HIPAA forbids it.”

In addition, there are no provisions in the law that say a pandemic or other public health emergency creates exceptions that allow researchers to protect privacy protection.

“The public health crisis should not affect recruitment for sleep studies,” said Mildred Cho, associate director of the Center for Biomedical Ethics at Stanford University.

However, he and other medical privacy experts note that legal loopholes do exist.

Perhaps the most important exception to HIPAA in the age of coronavirus is what is known as the “preparation for research” provision.

This allows researchers to examine people’s medical records to ascertain whether there are enough potential candidates for the study.

This provision does not give the researcher the right to contact possible study participants. That will require advance permission from the patient.

“Usually the only people who are allowed to make direct patient contact for research are patient health care providers,” Cho said, which means that only your doctor can reach out in this regard.

But, once again, there are exceptions.

Nancy M.P. King, co-director of the Center for Bioethics, Health and Society at Wake Forest University, said the hospital’s institutional review board, which oversees ethical issues, can independently limit patient privacy rights if at all possible.

Such councils “have a set of protocols that investigators must follow, which can produce summons like your readers mentioned,” he told me.

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This clearly has implications for high-speed race and high stakes for the COVID-19 vaccine.

If researchers believe certain types of patients show the most promising promise for testing, such work can be greatly accelerated if scientists know who to contact.

Which brings us back to the question: How did they find you?

Engel said he was told about the sleep study he wanted being carried out by the Norman Cousins ​​Center for Psychoneuroimmunology at UCLA, which he had never dealt with.

He asked the woman who called his house. He contacted the director of the Norman Cousins ​​Center. No one can or will say how they got access to Engel’s information.

Phil Hampton, a UCLA Health spokesman, told me by email that the campus medical center conducted “clinical trials and other research involving patients.”

“Consistent with the laws governing patient privacy, when looking for patients to participate in research studies, our practice is to contact only patients from whom we have written consent,” he said.

I conveyed this to Engel, who replied that he “did not remember giving them written permission to use my medical records for anything other than medical care.”

Apparently there is a reason for that.

Acting on an allegation, I asked Hampton if there was a good print in the form of routine privacy that people signed when they were treated at a UCLA medical facility that allowed the use of their information for research purposes.

He replied: “I can confirm that the patient’s signature on the privacy practice form authorizes UCLA outreach for the purpose of asking about the patient’s interest in participating in an approved research study.”

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Bingo.

The practice seems to be widespread. Spokesmen for the Cedars-Sinai Medical Center and USC told me that their patients agreed with the same language when they checked in. They say this is the “standard” in many hospitals.

If so, this is another reminder of the importance of reading printed documents. You never know what’s lurking there.

Although we would like to consider our medical records locked up, this is far from the case.

“Our records are not kept as secret as we thought,” said Matthew Weinberg, a professor of medical ethics at the Philadelphia College of Osteopathic Medicine. “Many individuals and organizations have official access to our personal medical information.”

If this makes you unable to sleep well at night, don’t worry. UCLA is researching that.

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Teodoro Obiang meets the Portuguese he saved from death | NEWS | DV

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Teodoro Obiang meets the Portuguese he saved from death |  NEWS |  DV

Teodoro Obiang was received on Tuesday (28.06) at the headquarters of the Community of Portuguese Speaking Countries (CPLP), where, not to mention the process of abolition of the death penalty in his country, he promised to comply with all the necessary recommendations of the membership. by organization. .

“We are ready, we are organizing to fulfill all the conditions that all CPSG member countries demand,” the President of Equatorial Guinea said in press statements without the right to ask questions.

Accompanied by Zacarias da Costa, executive secretary of the CPLP, Obiang assured that Portuguese, considered a foreign language in Equatorial Guinea, is on the rise, mainly because many young people are already learning the language in schools.

“Portuguese will become the language spoken throughout the country,” he promised.

The President of Equatorial Guinea is in Portugal as one of the senior government officials invited to the United Nations Oceans Conference, which is taking place in Lisbon until 1 July.

The presidential delegation of Equatorial Guinea includes First Lady Constance Mangue, Foreign Minister Simeon Oyono Esono, and Mozambique Murade Muraga, former CPLP Executive Secretary, who serves as Obiang’s Special Adviser for the Portuguese Language.

Jorge Trabulo Marquez spent 38 days canoeing in the Atlantic Ocean.

The head of state of Equatorial Guinea held several bilateral meetings, including with the President of the UN General Assembly, Adullah Shahid; was at the International Craft Fair (FIA), this Wednesday will be received by his Portuguese colleague Marcelo Rebelo de Sousa and will visit the Sanctuary of Fatima.

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“Obiang understood and set me free”

At the hotel where he was staying in Lisbon, Obiang received Portuguese journalist Jorge Trabulo Marques, who spent 47 years in prison in Malabo after 38 days of trying to cross the Atlantic by canoe from Sao Tome. . . .

Marquez says he was 30 years old at the time and it was Obiang, then supreme commander of the armed forces, who saved him from death.

“At that time, I was considered a spy because it was hard to believe that a European would sit in a canoe,” Jorge Trabulo Marquez told DW Africa.

“I was taken to Black Beach Maximum Security Prison and sentenced to hang. Five days later, while I was walking, the phone rang and it was Commander Obiang, the nephew of President Macias, who called me to his office to give the president a writ of execution.”

President of Equatorial Guinea Teodoro Obiang receives journalist Jorge Trabulo Marquez in Lisbon.

Meeting between President Teodoro Obiang and journalist Jorge Trabulo Marquez on Tuesday (28.06)

But Obiang, then 33, went against the execution order for his uncle Macias Nguema.

“Thank God he was understanding, he was generous, he took my word for it and set me free. I was here today to thank him for life because I saw death before me. Every night I heard piercing cries; terror prison. Whoever entered alive, came out in a tomb.”

At this meeting, the journalist expressed his gratitude by offering a picture painted with a portrait of a man who saved his life in a country where the Castilian language prevails and where the death penalty has not yet been completely abolished.

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Portuguese DJ Narciso among the first advertisements of the Polish festival Unsound – Showbiz

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Portuguese DJ Narciso among the first advertisements of the Polish festival Unsound - Showbiz

Musician DJ Narciso is the only Portuguese name in the first group of artists at Poland’s Unsound festival, which will take place in Krakow in October, the organization announced today.

The Portuguese DJ Narciso appears in the dance program of the festival, reminiscent of the organization that is part of the Príncipe publishing house from Lisbon.

Narciso created RS Produções in Río de Mouro, municipality of Sintra, in the middle of the last decade, which he shares with Nuno Beats, DJ Nulo, DJ Lima and Farucox.

This year he released the EP “NXE” with London’s Endgame by Chinese publisher SVBKVLT. According to a biography available on Bandcamp at the time of launch, DJ Narciso is “bringing together a new wave of artists from Kuduro from Lisbon, [sendo] one of the youngest members of Príncipe who helped redefine the genre.”

One of the most influential European festivals, which annually collects names from various musical fields and commissions works by contemporary authors, Unsound will present projects in Krakow in its 20th edition, such as the premiere of Osmium, which features Hildur Guðnadóttir. , Slater of Sam Blanket and James Ginsburg, who will play with singer Rulli Shabara on instruments made especially for the occasion, according to a statement from the event.

Polish cellist and composer Resina will join Frenchman Aho San in the Ego Death project, also curated by Unsound.

The Contemporary Spółdzielnia ensemble, in turn, will present “Vitriolum”, in which musicians interpret works on 3D-printed instruments “based on Carpathian flutes and ancient double reeds.”

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From October 9 to 16, Unsound will also host Oren Ambarchi, Johan Bertling and Andreas Verlin as Ghosted, as well as Japanese solo artist Phew and more.

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Portuguese deep tech fund raises over €32m for blue economy projects

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Portuguese deep tech fund raises over €32m for blue economy projects

The fund’s first investment in the blue economy and climate action is in Fuelsave, a German cleantech company.

Faber, a Portuguese emerging technology venture capital firm, announces that its Faber Blue Pioneers I fund exceeded its initial target of €30 million to close at €32 million.

Southern Europe’s first venture capital fund focused on “deep tech” for ocean sustainability and climate change has already made its first investment in Fuelsave, a German cleantech company.

Announced late last year, Faber Blue Pioneers I is funded by institutional investors with an impact strategy such as the European Investment Fund (FEI) and Portugal Blue, Sociedade Francisco Manuel dos Santos (through its part of Movendo Capital), Builders Initiative (the philanthropic arm of Builders Vision, impact platform founded by Lucas Walton, dedicated to creating a more humane and healthy planet and with an investment strategy in the oceans), the Calouste Gulbenkian Foundation and the Champalimaux Foundation, as well as entrepreneurs Peter Reeve, co-founder of SolarCity, CEO of Aqualink and president of Sofar Ocean Technologies, and Pedro Bizarro , co-founder and chief scientist of Feedzai.

Thus, the fund completes its first closure with a core of investors who are in full agreement with the thesis of the fund, with sustainable and investment programs on a global scale in this area, accompanied by successful entrepreneurs who want to support and contribute to the sustainability of the oceans and climate action, which Faber hopes to leverage with additional investors to join the fund’s closed end by the end of 2022.

AI and climate and ocean data

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Faber combines a dedicated focus on early stage deep tech startups (pre-seed and seed) with thematic funds, teams and dedicated advisors who actively work with entrepreneurs to build global artificial intelligence (AI) and climate companies. and ocean data and technology.

The goal of the fund is to invest in a portfolio of 20-25 early stage companies that develop innovative high-tech solutions with global ambitions in areas such as blue biotechnology, food innovation, ocean clean-up technologies or the decarbonization of many industries. with a clear contribution to the achievement of UN Sustainable Development Goals 13 and 14.

The fund is managed by a dedicated investment team led by Rita Souza and Carlos Esteban (Partners) and Bruno Ferreira (Venture Partner) with extensive experience in investment, entrepreneurship and technology. The team will work closely with a network of experts, including strategic adviser Thiago Pitta e Cunha (CEO of the Oceano Azul Foundation) and scientific advisors Susana Moreira and Joana Moreira da Silva (science and innovation researchers at Ciimar), as well as with other scientists and industry representatives. experts.

At the time of the first closing, the specialized investment group (based between Lisbon and Barcelona) analyzed more than 600 start-ups from all over Europe, with a particular focus on those starting in the Iberian Peninsula or elsewhere. geographically and who are looking for a suitable partner to expand their activities in Portugal and thus take advantage of the conditions that the country offers to launch high-tech and innovative projects in the blue economy.

The fund’s first investment was in Fuelsave, a German cleantech company focused on the decarbonization of the marine industry, and Faber already has additional investments nearing completion and to be completed over the next few weeks.

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“We are proud to announce Faber Blue Pioneers I’s first major plan above the original goal with a remarkable group of investors who share our strong belief that science and entrepreneurs can accelerate innovation and have a positive impact on ocean and climate resilience. action. We are also very pleased to welcome Fuelsave to the fund’s portfolio as we believe its team will pave the way for the decarbonization of the maritime industry,” says Alexandre Barbosa, Managing Partner of Faber.

Faber is the first Iberian partner of 1000 Ocean Startups, a global coalition of incubators, accelerators, venture capital funds and other platforms dedicated to accelerating innovation with a positive impact on the oceans and supporting at least 1000 startups that are transforming the sustainability of the oceans, oceans and making a significant contribution to the Goal. United Nations in the field of sustainable development 14.

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