The SearchVoat Forum

The media in Great Britain, the United States, and Germany have reported that BGI Group, the Chinese genetic technology leader, has been working with the Chinese Communist Party (CCP) and military to identify and study the genetic characteristics of different populations. This has involved the genetic testing of millions of pregnant women from around the world...

BGI also works with Chinese communication technology companies such as Huawei to establish a biological/medical big-data center where the data is used to manufacture biochemical weapons and genetically enhance China’s military...

A recent report (pdf) by the U.S.-China Economic Security Review Commission (USCC) confirmed that since 2019, and on behalf of the CCP, BGI had infiltrated the United States to collect biological data from Americans.

But the infiltration actually started prior to this. In November 2011, BGI and the Children’s Hospital of Philadelphia (CHOP) announced a partnership to conduct genomic research using BGI’s genetic sequencing technology and CHOP’s pediatric bio-database. BGI also partnered with the University of California, Davis, to establish a genetic sequencing center and utilize the university’s bio-database for research.

The Children's Hospital of Philadelphia (CHOP) is a children's hospital in Philadelphia, Pennsylvania, with its primary campus located in the University City neighborhood of West Philadelphia in the campus of the University of Pennsylvania. ..

The hospital is located next to the University of Pennsylvania and its physicians serve as the pediatrics department of the Perelman School of Medicine at the University of Pennsylvania.

A 2004 BBC documentary 'exposed how the city of New York forced "HIV" positive children under its supervision to be used as human guinea pigs in tests for experimental Antiretroviral drug trials. All of the children in the program were under the legal guidance of the city's child welfare department, the Administration for Children's Services.' https://youtu.be/is6Dtx8bXSU

..The ICC is a non-profit corporation affiliated with the Archdiocese of New York and Columbia University.... In 2005, the Center was the focus of "Guinea Pig Kids", a BBC documentary alleging ethical violations in these clinical trials...

In the UK, the Guardian newspaper highlighted the involvement of GlaxoSmithKline in the case: https://www.theguardian.com/world/2004/ ... reducation

Apparently the Incarnation Children's Center was the brainchildchild of Dr. Stephen W. Nicholas : https://www.nytimes.com/2005/07/17/nyre ... trial.html

Looking for more info on the doctor took me to the website of the Kenyan charity Nyumbani: http://www.nyumbani.org/meet-stephen-nicholas-dean/

..In its early days, Father D’Agostino visited Incarnation with a mutual friend of Nicholas, David Pincus. Nicholas remembers Father D’Ag showing up on the ICC’s doorstep one day, eager to learn more about New York’s first home for pediatric AIDS patients. Not long after his visit to ICC and introduction to Nicholas, Father D’Ag was in Kenya founding Nyumbani, a home reminiscent of the children’s home in Harlem.

Newly Chosen UK Foreign Secretary Jeremy Hunt Potential POI?: Worked with Orphan Rapist / BA Pilot Simon Wood at Nyumbani; Was Funded by Groucho Club Chairman; Led Jimmy Savile Investigations https://searchvoat.co/v/GreatAwakening/2626986

The founder of Nyumbani, an Air Force urology surgeon, Georgetown University psychiatrist, and Jesuit priest named Angelo D'Agostino, is pictured here in the Clinton Oval Office

... It should be noted that D'Agostino was close to the late Senators Jesse Helms and Patrick Leahy, with Leahy calling D'Agostino "a living saint," because Cathy O'Brien alleges Patrick Leahy raped her daughter many times, and otherwise tortured her, Cathy, in numerous incidents.

A portrait of David Pincus https://www.inquirer.com/philly/living/ ... actor.html

excerpts:

Elie Wiesel has traveled all over the world with David N. Pincus, a retired Philadelphia clothing manufacturer. They've traveled to Auschwitz, to Moscow, to Kosovo, and to the White House...But a 1987 trip to Brazil stands out in the Nobel Peace Prize winner's memory. "We were going to meet the president of Brazil," said Wiesel, who was being presented with an award. "And David just disappeared."

Pincus had discovered a colony of destitute children in São Paulo. Given the choice between attending a formal state banquet and a chance to spread joy among the poor, Pincus chose to visit the kids.

Pincus is a largely unsung humanitarian, more comfortable working behind the scenes. He is well-known in Philadelphia art circles for his impressive modern collection and for donating his works to the region's biggest museums. But most of his charity has escaped notice because it was overseas, or anonymous...

..I met Pincus 10 years ago when I was The Inquirer's Africa correspondent. He was a board member of the International Rescue Committee, one of America's oldest relief organizations...

.Pincus set up a U.S. charity, Friends of Sparrows, to channel tax-deductible contributions to the hospice. It has sent about $250,000 to South Africa. The hospice has expanded into a village housing 330 clients, mostly children, with a budget of $1 million...

..Pincus also introduced her to Children's Hospital of Philadelphia, where he recently committed $1.3 million over five years to create a global health fellowship that will send two pediatricians overseas to assist AIDS programs. The gift will help the hospital take a lead in international health, said Rodney Finalle, the fellowship director.

..In 1999, Pincus encouraged Nicholas to extend his outreach to the Dominican Republic. When Nicholas organized the International Family AIDS Program on the island, Pincus lined up support from Harold A. Honickman, the beverage mogul, and Sy Syms, the clothing retailer.

..Pincus' father, Nathan, and uncles founded the clothing firm in 1911 after emigrating from what is now Belarus. The firm thrived. PBM became one of the largest manufacturers in an industry that employed 25,000 people in Philadelphia before the jobs went overseas.

..Pincus' connections in the art world multiplied. He became involved in the Institute of Contemporary Art at the University of Pennsylvania when it opened in 1963. Through the ICA, he met Warhol and acquired a few of his works, some of them promised to the Philadelphia Museum of Art, where Pincus headed the 20th Century Committee and was a trustee for more than 35 years.

adrenochrome formation observed with a dual wavelength spectrophotometer at Johnson Research Foundation, University of Pennsylvania https://febs.onlinelibrary.wiley.com/do ... 74)80281-4

https://www.med.upenn.edu/jf/bsbcore/index.html Johnson Foundation, Perelman School of Medicine

The Department of Biochemistry and Biophysics at the University of Pennsylvania is privileged to have a wide range of unique equipment and expertise to facilitate modern biophysical characterization and structural analysis of proteins and other biomolecules. These facilities, funded in large part through the generosity of the Johnson Foundation

Amid Epstein fallout, MIT's Center for Civic Media director resigns [Ethan Zuckerman]

MIT Consortium Research Lab Members List : Robert Wood Johnson Foundation - affiliate

Voat posts re Robert Wood Johnson Foundation :

Weill Cornell Medicine, the humanitarian network, Jeffrey EPSTEIN and Ghislaine MAXWELL https://searchvoat.co/v/pizzagate/3733311/23127787

Kathleen Foley is involved in the "palliative" medicine movement. She worked with George Soros, Purdue Pharma, and J&J to manufacture the opiate crisis. Palliative Care trades the conventional concept of curative medicine with one that focuses on pain relief (opiates)

She began working with George Soros in 1995 when he founded the "Project on Death in America" in partnership with the Robert Wood Johnson Foundation.

This project began sponsoring doctors, nurses, teachers, universities, and textbooks to lower the threshold in which doctors would prescribe opiates. They created a "painscale" for patients and doctors, and integrated pain as a "vital sign". It started with terminal cancer patients and slowly opiates became the preferred first line strategy for all pain mgmt. They even funded propaganda stating opiates were "perfectly safe" and acetominophin and ibuprofen were dangerous due to liver damage

The Sackler family got the raw material for their opiates from J&J's farms. They too sponsored Kathleen Foley. Mortimer Sackler and George Soros were tennis buddies and neighbors in Gstaad.

Pediatric HIV specialist who worked in the mid-1980s to create the pediatric AIDS program at Harlem Hospital, where he later became Chairman of Pediatrics. He co-founded the Incarnation Children’s Center for homeless children with AIDS in 1988. In 1999, he founded the Columbia University International Family AIDS Program to support the prevention of mother-to-child HIV transmission in the Dominican Republic and, subsequently, the creation of Clínica de Familia La Romana. He was previously the Senior Associate Dean for Admissions at the Columbia University Vagelos College of Physicians and Surgeons (“P&S”); Professor of Pediatrics (P&S) and Population and Family Health (Mailman School of Public Health) at Columbia University; and Founder and Director of the Program for Global and Population Health at P&S (formerly the IFAP Global Health Program).

Matthew Lazarus is a U.S. Marine Veteran that has come forward saying that as a child he and other children were raped for ten years by now big Hollywood Composer Christian Kriegeskotte. Christian was 14 and Matthew was nine when Christian began sexually assaulting him. ..

Christian is currently a big Hollywood composer. He has worked in Hollywood on the scores for Star Wars III, Charlie and the Chocolate Factory, Cars and The Interpreter as well as television scores for The Simpsons, Family Guy, King of the Hill and American Dad*... Christian also wrote music for Nickelodean...

Matthew said Christian was trying to build a child rape torture dungeon at Marsh Memorial Sanctuary. He said multiple children were being sexually assaulted while being forced to build it but they failed. That quote with his father "tell me something I don't know" and having child slaves at Marsh along with knowing about the sexual abuse means their in on it. Now let's talk about Marsh Memorial Sanctuary...

Billy Baldwin lives 5 minutes from Marsh Sanctuary
http://variety.com/2008/dirt/real-estal ... 201228463/

Hillary Clinton's doctor works at the Mount Kisco Medical Group, an 8 minute walk from Marsh Memorial Sanctuary

Christian's father was a naturalist at Marsh Marsh naturalists..His father, Carl Kriegeskotte, is a film-maker. ..address26 Parkview Place, Mount Kisco, NY 10549 . A google search indicates a company called Silver Owl Inc there.

Mary Kennedy discovered at Mount Kisco property, Westchester County... Their home was a one minute drive from the Marsh sanctuary... Hillary Clinton's doctor works at the Mount Kisco Medical Group, an 8 minute drive from Marsh Memorial Sanctuary

Right next to Marsh Memorial Sanctuary is the Unitarian Universalist Fellowship of Northern Westchester

They are connected to the teachings of Blavatsky, the UN and the Lucis Trust..you know..those Luciferians... https://thewildvoice.org/new-age-new-world-order/

https://thewildvoice.org/new-age-new-world-order/#UUA

Mary Kerry Kennedy (born September 8, 1959) is an American lawyer, author and human rights activist. She is the seventh child and third daughter of Robert F. Kennedy and Ethel Skakel. During her 15-year marriage to New York Governor Andrew Cuomo, from 1990 to 2005, she was known as Kerry Kennedy-Cuomo. She is the president of Robert F. Kennedy Human Rights, a non-profit human rights advocacy organization..

Kennedy is the chair of the Amnesty International Leadership Council, and her writing has been published in The Boston Globe, The Chicago Sun-Times, and The New York Times.[5] She also serves on the advisory board of the Columbia Center on Sustainable Investment at Columbia University...

Kennedy is the author of Speak Truth to Power: Human Rights Defenders Who Are Changing Our World, which features interviews with human rights activists including Marian Wright Edelman, the Dalai Lama, Archbishop Desmond Tutu, Elie Wiesel, and more. ..

In July 2012, Kennedy allegedly sideswiped a tractor trailer on Interstate 684 in Westchester County. On the morning of July 13, 2012, Kennedy was found in her white Lexus. A police report said Kennedy had trouble speaking, was swaying and told an officer that she may have accidentally taken a sleeping pill earlier that day. In a court appearance on July 17, 2012, Kennedy said local hospital tests found no traces of drugs and that her doctor believed she had suffered a seizure. Kennedy pleaded not guilty to driving while impaired. Kennedy was charged by state police with leaving the scene of an accident. A toxicology report filed on July 25, 2012, said zolpidem was found in a sample of her blood taken when Kennedy was arrested,[41] at which point Kennedy released a statement saying in part, "The results we received today from the Westchester County lab showed trace amounts of a sleep aid in my system, so it now appears that my first instinct was correct. I am deeply sorry to all those I endangered that day, and am enormously grateful for the support I have received over the past two weeks." Kennedy said she did not remember anything after entering a highway to go to a gym and before she found herself at a traffic light with a police officer at her door.

Future: the Holocaust in an Age of Genocide https://link.springer.com/content/pdf/b ... -3%2F1.pdf

Editors in Chief
John K. Roth and Elisabeth Maxwell

Honorary President - Elie Wiesel (USA)

..Elisabeth Jenny Jeanne "Betty" Maxwell (née Meynard; 11 March 1921 – 7 August 2013) was a French-born researcher on the Holocaust who established the journal Holocaust and Genocide Studies in 1987.[1] She was married to publishing tycoon Robert Maxwell from 1945 until his death in 1991 ... Later in life, she was recognized for her work as a proponent of Interfaith dialogue and received several awards including an honorary fellowship from the Woolf Institute at Cambridge...

Leslie Pincus-Elliot, the youngest of his three children, described her father as a "tough guy and an oddball" who, in the presence of needy children, "becomes a big puddle of mush."

Gilliam Chynna Phillips (born February 12, 1968) is an American singer and actress, and a member of the vocal group Wilson Phillips. She is the daughter of The Mamas & the Papas band members John and Michelle Phillips, and the half-sister of Mackenzie and Bijou Phillips.

Phillips met actor William Baldwin of the acting Baldwin family in 1991 and has been married to him since 1995. Together, they have three children, daughters Jameson (born in 2000) and Brooke (born in 2004) and son Vance (born in 2001).[.. In September 2009 Chynna's half-sister, Mackenzie Phillips, alleged in her memoirs that she [Mackenzie] and her father had a "consensual" ten-year incestuous relationship.[11] While both Geneviève Waïte (John's wife at the time, and mother of Bijou Phillips), and Michelle Phillips, John's second wife (mother of Chynna Phillips) told the media that they did not believe her claims, Chynna said she believed Mackenzie

Univ. of Pittsburgh posts:

Jeffrey Epstein's scientists - on the suspension of Martin Nowak at Harvard and the resignation of Dr Neil Ferguson at Imperial College London, coronavirus simulation modeller https://searchvoat.co/v/pizzagatewhatever/3805987

The Pittsburgh Chinese School and links to Wuhan, a recent murder of a Chinese coronavirus scientist and the Jeffrey Epstein and Bill Gates vaccine network https://searchvoat.co/v/pizzagate/3806008

Bing Liu murder: Not coronavirus finding but Chinese scientist in US killed over common love interest https://searchvoat.co/v/news/3807025

After the deindustrialization of the mid-20th century, Pittsburgh has transformed into a hub for the health care, education, and technology industries.[12] Pittsburgh is a leader in the health care sector as the home to large medical providers such as University of Pittsburgh Medical Center (UPMC). The area is home to 68 colleges and universities, including research and development leaders Carnegie Mellon University and the University of Pittsburgh.[13] Google, Apple Inc., Bosch, Facebook, Uber, Nokia, Autodesk, Amazon, Microsoft and IBM are among 1,600 technology firms generating $20.7 billion in annual Pittsburgh payrolls. The area has served as the long-time federal agency headquarters for cyber defense, software engineering, robotics, energy research and the nuclear navy.[14] The nation's fifth-largest bank, eight Fortune 500 companies, and six of the top 300 U.S. law firms make their global headquarters in the area, while RAND Corporation (RAND), BNY Mellon, Nova, FedEx, Bayer, and the National Institute for Occupational Safety and Health (NIOSH) have regional bases that helped Pittsburgh become the sixth-best area for U.S. job growth.[15]

In 2015, Pittsburgh was listed among the "eleven most livable cities in the world".[16][17] The Economist's Global Liveability Ranking placed Pittsburgh as the most or second-most livable city in the United States in 2005, 2009, 2011, 2012, 2014 and 2018.[18][19] The region is a hub for Leadership in Energy and Environmental Design and energy extraction.

..Hank's recent Cecil B. DeMille award is mentioned. ... Remember his bizarre speech there just before he took off for Australia and 'discovered he's coronavirus positive' ? So, who's connected to that award? Let's take a look..... the Cecil B. DeMille Foundation donated the "Paradise" ranch to the Hathaway Foundation, which cares for emotionally disturbed and abused children...A large collection of DeMille's materials including scripts, storyboards, and films resides at Brigham Young University in L. Tom Perry Special Collections.

Brigham Young University (BYU, sometimes referred to colloquially as The Y) is a private research university located in Provo, Utah and owned by The Church of Jesus Christ of Latter-day Saints (LDS Church)...

James Ostermann Mason (June 19, 1930 – October 9, 2019) was an American medical doctor and public health administrator. He was the United States Assistant Secretary for Health (ASH) from 1989 to 1993 and the Acting Surgeon General of the United States from 1989 to 1990. As the ASH he was also a former four-star admiral in the United States Public Health Service Commissioned Corps. He was also a director of the Centers for Disease Control and Prevention and a general authority of The Church of Jesus Christ of Latter-day Saints (LDS Church).... He later served as the American delegate to the World Health Organization.

..East of Port-au-Prince, near the Dominican border, is the field hospital established under the leadership of the Harvard Humanitarian Initiative in Fond Parisien.....

In the past we have made a number of posts regarding this network involving Harvard, Beth Israel Deaconess Hospital and Partners in Health (PIH)....

[comment by carmencita]:

At one time Deaconess was owned by Tenet. This is no longer true. They no longer maintain their records. Deaconess was a slum hospital. It’s the hospital with the pile of money under the sheet.

It was 20% between 2012 and 2015 at Tenet's St. Christopher's Hospital for Children in Pennsylvania! http://www.4-traders.com/TENET-HEALTHCA ... -24608868/

"The North Philadelphia hospital chose not to submit its patient data for the agency's previous report on pediatric heart surgery, issued in 2015. The hospital voluntarily stopped performing all non-emergency heart procedures in late January 2016 pending an internal review.

Hospital officials said Wednesday they were poised to resume offering the service this summer.

Soon after the stoppage last year, an Inquirer analysis found that 24 percent of newborns, defined as babies younger than 31 days, had died after heart surgery at St. Christopher's from 2009 through 2014. A month after that article was published, state investigators conducted a surprise three-day inspection of the facility, finding that the hospital failed to fully investigate why nine of its patients died after heart surgery."

An article written by Tenet Healthcare about our nurses...

MetroWest Nurses Return to Boston Marathon Medical Tent

On April 15, 2013, thousands of people crowded along the Boston Marathon route to cheer on friends, family members and strangers. The weather was perfect, offering ideal running conditions for those brave enough to endure the twenty-six mile trek. The medical tent, which is equipped with everything that would be found in a hospital emergency room, was at half capacity. Several nurses from Tenet’s MetroWest Medical Center tended to patients suffering from hyperthermia, dehydration, sprains and chest pain.
Volunteering at the marathon was an act of service that nurses from MetroWest had provided for twenty-four years. In fact, Dr. Marvin Adner, a physician at MetroWest, started the medical tent during his tenure as medical director for the marathon.
In twenty-four years, the nurses had seen a wide range of injuries. And, this year seemed no different than any other.
Then, the first explosion went off.
“Our volunteers ran out to the site of the bombing to rescue and save people, putting their own lives aside,” said Ruth Walton, chief nursing executive for the Northeast Region.
The nurses started working to stabilize victims with serious injuries. These efforts were critical to minimizing injuries as they worked to treat patients, sometimes just holding their hands and keeping them calm until the Boston EMS could transport them to the nearest hospital.
“We saw people who were wide awake and coherent but missing legs, people with shrapnel wounds, and people who had lost their hearing and couldn’t answer our questions,” said Jeanette Corsini, a MetroWest nurse and head nurse of the marathon’s medical tent. “None of the patients were crying or screaming or saying anything. I think everyone was in shock. No one was prepared for a war zone, which is what it was.”
Because the nurses were so prepared and the tent was stocked with the needed supplies, the nurses were able to triage the patients and provide critical care to those awaiting EMS transport.
Jeannette has volunteered at the medical tent for more than two decades. In her role as head nurse for the tent, she is responsible for assigning nurses to patients and working to solve issues that arise in the tent.
“The tent is very organized. It’s always amazing how so many strangers can come together to make it work,” said Jeanette, who usually only knows a handful of the nurses working at the tent each year. The rest of the nurses come from all over the country – Texas, California, Maryland, Florida – as well as other Boston-area hospitals.
Despite the chaos and trauma of last year’s marathon, all members of the hospital’s volunteer group returned to provide medical support for the runners on the one year anniversary of the attacks. This year marked the 25th year of volunteering for MetroWest nurses.
The day was sunny and warm and the medical tent was at full capacity, mostly with cases of hyperthermia and runners in need of fluids or ice baths. This year, like all of the other years, the nurses were proud to help.
“This is their mission, they do it every year,” said Ruth. “Last year had to be traumatic for them. I’m proud of them for not letting fear get in the way.”

2011:

The BGICHOP partnership aims to discover the molecular basis of rare and common diseases affecting children.

The Children’s Hospital of Philadelphia and BGI formed a partnership to identify genes underpinning pediatric diseases. BGICHOP has been established to conduct large-scale human genome sequencing and analysis at the newly established Joint Genome Center at Children’s Hospital. The center became fully operational last month.

The BGICHOP collaboration will combine BGI’s capabilities and expertise in whole-genome sequencing and analysis with Children’s Hospital’s extensive biobank and expertise in clinical phenotyping. “The Children’s Hospital of Philadelphia has built the largest pediatric biobank in the world, and because many of these samples have been linked to clinical data using an electronic medical record, we can now follow disease processes into adulthood,” points out Hakon Hakonarson, M.D., Ph.D., director of the Center for Applied Genomics at Children’s Hospital.

BGICHOP will target both rare and common pediatric diseases. “The ultimate goal is to change the way we diagnose and treat diseases that affect children and families, and our work with BGI is an important first step toward that end,” says Philip Johnson, M.D., CSO at The Children’s Hospital of Philadelphia.

2020:

..Leading off the conference was Hakon Hakonarson, MD, PhD, director of the Center for Applied Genomics at Children’s Hospital of Philadelphia and professor of pediatrics at the University of Pennsylvania Perelman School of Medicine. Dr. Hakonsarson began his career in Iceland, where he helped to create one of the world’s first genetic databases based on samples from more than half the nation’s population. Iceland is the perfect place to compile a genetic database because the country’s small, homogenous population makes it easy for researchers to find connections between genes, mutations and diseases.

Dr. Hakonarson and colleagues created a company to compile and store the data – deCODE Genetics, Inc. However, its efforts quickly bumped up against legal and ethical concerns. DeCODE had obtained samples from the medical records of Icelanders based on the notion of presumed consent – the assumption that data subjects have consented to inclusion of their information unless they affirmatively opt out. That did not sit well with Iceland’s Supreme Court, which ruled that going forward, subjects must consent explicitly. As a result, deCODE was not able to include samples from Iceland’s entire population, but it still had enough to conduct a range of important studies.

After leaving deCODE, Dr. Hakonarson founded CHOP’s Center for Applied Genomics, which created a biobank with genotypes of 100,000 children. A database of this size is tremendously valuable in finding biomarkers for genetic diseases to help develop treatments, and it is able to take advantage of novel gene editing technologies, such as crispr-cas9. Its work has helped to advance several new molecular diagnosis and treatment techniques; for example, it enables physicians to prescribe drugs more precisely using metabolic enzyme variants rather than height and weight to determine dosage. It also enables the use of more effective approaches to cancer treatment that are guided by a patient’s genome rather than simply by the organ system affected.

A decade ago, Dr. Hakonarson’s work might have seemed a science fiction fantasy, but today it is rapidly becoming common practice. A panel of experts in clinical genetics and research described a range of new genetic treatments and directions in research – and the ethical issues they raise. Michelle Holko, PhD, MS, Presidential Innovation Fellow with the National Institutes of Health (NIH) All of Us program, explained the program’s plans for compiling a unique genomic database for research.

All of Us is a historic effort to gather data over many years from one million or more people living in the United States. When completed, it will serve as an international resource for studying the ways individual differences in lifestyle, environment and biological makeup influence health and disease. So far, more than 271,000 participants have contributed biospecimens, answered surveys and agreed to share their electronic health records. About 80 percent of them are from populations traditionally underrepresented in biomedical research. Such a large database that broadly represents the population holds tremendous promise for advancing the field of precision medicine, which targets treatments to each patient’s genetic makeup.

Reed Pyeritz, MD, PhD, William Smilow Professor at the University of Pennsylvania Perelman School of Medicine, described the problem of “variants of uncertain significance,” genetic findings that are difficult to interpret. There had been an assumption that as genetic sequencing and analysis techniques evolved, uncertainties in interpreting the results would diminish. However, the availability of more data at more refined levels has actually increased uncertainties, which has created ethical conundrums for physicians and patients.

Dr. Pyeritz also described a related problem of whether and when to recontact patients as new discoveries affecting the interpretation of their genetic profiles are made. Communication guidelines are lacking, in particular guidelines for obtaining consent from patients for receiving updates. “Recontact is not a simple issue,” said Dr. Pyeritz. In addition to ethical concerns, there are practical constraints. For example, how do you contact patients who change their physical and digital addresses?

Another concern is the appropriate response of clinicians when genetic testing indicates susceptibility to a disease for which the patient was not tested. Is there an ethical duty to communicate these incidental findings? What kind of consent should patients provide before they can be informed of them?...

Sierra Luther, associate counsel at 23andMe, noted that while current privacy law offers piecemeal guidance for permissible data use, consumers can choose a genetic testing company that “does the correct job, aligns with the practice that you believe, [and] then you will maintain meaningful control over your data.” She described her company’s efforts to lead in that regard by clearly and publicly disclosing its data privacy practices and company-wide security measures, allowing customers to opt-in to the use of their data in research, and subjecting research to review by an internal institutional review board.

...Holly Fernandez Lynch, JD, MBe, John Russell Dickson, MD Presidential Assistant Professor of Medical Ethics at the University of Pennsylvania Perelman School of Medicine, elaborated on the role of IRBs in protecting privacy in human subjects research and the shortcomings of their oversight. They do not review non-research uses of data, secondary research with deidentified data, research considered to pose limited risk, and activities exempted by local policy. Some of these gaps are addressed by other federal laws, but some are not. She also discussed the role of data access committees, which review requests for access to research databases. But, again, their effectiveness is uneven.

Bringing these themes together was Mark A. Rothstein, Herbert F. Boehl Chair of Law and Medicine at the University of Louisville School of Medicine and Brandeis School of Law. He emphasized the limitations of current laws in the realm of health information privacy.

The Health Insurance Portability and Accountability Act (HIPAA), which is the primary legal protection for patient medical health information, was actually enacted for a different purpose. It was intended to address the problem of job lock, which had kept many employees from changing jobs because a subsequent employer’s health coverage would exclude them based on a preexisting condition. Protection of patient privacy was added as an afterthought. The law directed the Department of Health and Human Services to enact regulations to that end, which became known as the HIPAA Privacy Rule. However, the Rule is limited in scope, applying only to records kept by health care providers, health plans, health clearing houses, and their business associates. It does not apply to employers, life insurance companies, and other entities not in the payment chain. The Rule also includes 12 broadly worded “public purpose” exceptions that allow providers to disclose, without a patient’s knowledge or consent, health information in individually identifiable form.

The Genetic Information Nondiscrimination Act (GINA) was enacted to allay fears regarding discrimination based specifically on genetic information. However, that law is also limited in scope, applying only to discrimination in health insurance and employment. Professor Rothstein remarked that the statute’s definitions of discrimination are “locked in time” because they only apply to “human DNA” and therefore do not cover information generated by such new technologies as epigenetics and microbiomics. Moreover, the law does not apply to life, disability or long-term care insurance, or to genetic discrimination in education, housing and other important areas, and it does not apply once a genetic condition has become manifest.

Professor Rothstein concluded, “We have no privacy. We may think we do, but there is no privacy of health information.” Creating sufficient protections will be difficult, but “not having privacy, I think, would be worse. We’d lose dignity, humanity.”

The conference took place just before the COVID-19 pandemic began to spread across the United States and social distancing measures were put in place in all states. The topic of genetic database privacy has taken on increasing urgency, as genetic research is called on to help understand the virus’s spread. ..