Robin McKie
The Guardian
Originally published November 25, 2018
Lawyers are bringing a case against a London hospital trust that could trigger major changes to the rules governing patient confidentiality. The case involves a woman who is suing doctors because they failed to tell her about her father’s fatal hereditary disease before she had her own child.
The woman discovered – after giving birth – that her father carried the gene for Huntington’s disease, a degenerative, incurable brain condition. Later she found out she had inherited the gene and that her own daughter, now eight, has a 50% chance of having it.
The woman – who cannot be named for legal reasons – says she would have had an abortion had she known about her father’s condition, and is suing the doctors who failed to tell her about the risks she and her child faced. It is the first case in English law to deal with a relative’s claim over issues of genetic responsibility.
“This could really change the way we do medicine, because it is about the duty that doctors have to share genetic test results with relatives and whether the duty exists in law,” said Anna Middleton, head of society and ethics research at the Wellcome Genome Campus in Cambridge.
The info is here.
Showing posts with label Genetic Information. Show all posts
Showing posts with label Genetic Information. Show all posts
Saturday, December 29, 2018
Friday, March 24, 2017
The Privacy Delusions Of Genetic Testing
Peter Pitts
Forbes
Originally posted February 15, 2017
Here is an excerpt:
The problem starts with the Health Insurance Portability and Accountability Act (HIPAA), a 1996 federal law that allows medical companies to share and sell patient data if it has been "anonymized," or scrubbed of any obvious identifying characteristics.
The Portability Act was passed when genetic testing was just a distant dream on the horizon of personalized medicine. But today, that loophole has proven to be a cash cow. For instance, 23andMe has sold access to its database to at least 13 outside pharmaceutical firms. One buyer, Genentech, ponied up a cool $10 million for the genetic profiles of people suffering from Parkinson's. AncestryDNA, another popular personal genetics company, recently announced a lucrative data-sharing partnership with the biotech company Calico.
Sunday, August 7, 2016
Is Knowing Your Genetic Information Helpful?
By Laura Landro
The Wall Street Journal
Originally published June 26, 2016
Here is an excerpt:
How different people handle uncertainty is also a concern. The surveys include questions such as whether unforeseen events are highly upsetting and whether participants can function well in a climate of uncertainty.
The survey results aren’t final yet. But Dr. Leonard says one concern people have is “learning about something they just don’t want to know about.”
Among the ethical issues she is exploring is “whether someone should be given the choice not to know about a disease risk for which there are preventive or monitoring strategies that would reduce the severity of the disease and therefore the cost of care.”
The article is here.
The Wall Street Journal
Originally published June 26, 2016
Here is an excerpt:
How different people handle uncertainty is also a concern. The surveys include questions such as whether unforeseen events are highly upsetting and whether participants can function well in a climate of uncertainty.
The survey results aren’t final yet. But Dr. Leonard says one concern people have is “learning about something they just don’t want to know about.”
Among the ethical issues she is exploring is “whether someone should be given the choice not to know about a disease risk for which there are preventive or monitoring strategies that would reduce the severity of the disease and therefore the cost of care.”
The article is here.
Sunday, July 20, 2014
In Depth: Should We Design Our Babies?
The Aspen Institute
Streamed live on July 2, 2014
The discussion of "designer babies" often revolves around gender or hair color, but the medical debate is far more complicated. Should we screen embryos for disease or other genetic modifications? These considerations raise ethical questions and call into question the validity of surrounding research. The lack of regulation and oversight make this particular biotechnology frightening to some, while the potential for disease eradicating techniques excites others. But how far is too far? What are the major scientific and ethical hurdles to assuage the skeptics? Underwritten by Booz Allen Hamilton
Streamed live on July 2, 2014
The discussion of "designer babies" often revolves around gender or hair color, but the medical debate is far more complicated. Should we screen embryos for disease or other genetic modifications? These considerations raise ethical questions and call into question the validity of surrounding research. The lack of regulation and oversight make this particular biotechnology frightening to some, while the potential for disease eradicating techniques excites others. But how far is too far? What are the major scientific and ethical hurdles to assuage the skeptics? Underwritten by Booz Allen Hamilton
Saturday, December 21, 2013
What to Consider Before Undergoing a DNA Test
By Anne Tergesen
The Wall Street Journal
Originally published December 8, 2013
As the price of sequencing a person's entire DNA has tumbled from $1 billion a decade ago to a few thousand dollars today, many adults—and their physicians—are turning to genetic tests to better understand and manage their health.
The process, though, can be problematic. Some people who test, like the actress Angelina Jolie, learn information that can have dramatic consequences for their health and insurability—and that of their relatives.
And the testing business itself is still young and experiencing growing pains. Last month the Food and Drug Administration ordered genetic-testing firm 23andMe Inc. to stop marketing its $99 mail-order kit. The agency warned that false results could prompt consumers to undergo unnecessary health procedures. The company halted all ads for the kit and said it would work with regulators to address their concerns.
The entire article is here.
The Wall Street Journal
Originally published December 8, 2013
As the price of sequencing a person's entire DNA has tumbled from $1 billion a decade ago to a few thousand dollars today, many adults—and their physicians—are turning to genetic tests to better understand and manage their health.
The process, though, can be problematic. Some people who test, like the actress Angelina Jolie, learn information that can have dramatic consequences for their health and insurability—and that of their relatives.
And the testing business itself is still young and experiencing growing pains. Last month the Food and Drug Administration ordered genetic-testing firm 23andMe Inc. to stop marketing its $99 mail-order kit. The agency warned that false results could prompt consumers to undergo unnecessary health procedures. The company halted all ads for the kit and said it would work with regulators to address their concerns.
The entire article is here.
Sunday, November 3, 2013
Epigenetics: How to alter your genes
We’ve long been told our genes are our destiny. But it’s now thought they can be changed by habit, lifestyle, even finances. What does this mean for our children?
By Chris Bell
The Telegraph
Originally published on October 16, 2013
Here is an excerpt:
And yet a quiet scientific revolution is changing that thinking. For it seems you might also be what your mother ate. How much your father drank. And what your grandma smoked. Likewise your own children, too, may be shaped by whether you spend your evenings jogging, worrying about work, or sat on the sofa eating Wotsits. And that nurture, rather than our intractable nature, may determine who we are far more than was ever previously thought.
Epigenetics is a relatively new scientific field; research only began in earnest in the mid Nineties, and has only found traction in the wider scientific community in the last decade or so. And the sources of its data are eclectic, to say the least – stretching from famines in northern Sweden to the 9/11 attacks to the medical notes of Audrey Hepburn.
The entire story is here.
By Chris Bell
The Telegraph
Originally published on October 16, 2013
Here is an excerpt:
And yet a quiet scientific revolution is changing that thinking. For it seems you might also be what your mother ate. How much your father drank. And what your grandma smoked. Likewise your own children, too, may be shaped by whether you spend your evenings jogging, worrying about work, or sat on the sofa eating Wotsits. And that nurture, rather than our intractable nature, may determine who we are far more than was ever previously thought.
Epigenetics is a relatively new scientific field; research only began in earnest in the mid Nineties, and has only found traction in the wider scientific community in the last decade or so. And the sources of its data are eclectic, to say the least – stretching from famines in northern Sweden to the 9/11 attacks to the medical notes of Audrey Hepburn.
The entire story is here.
Thursday, October 24, 2013
Proposed Treatment To Fix Genetic Diseases Raising Ethics Issues
by ROB STEIN
NPR News
Originally published October 09, 2013
Here is an excerpt:
Specifically, the research would create an egg with healthy mitochondrial DNA (mtDNA). Unlike the DNA that most people are familiar with — the 23 pairs of human chromosomes that program most of our body processes — mtDNA is the bit of genetic material inside mitochondria, living structures inside a cell that provide its energy.
Scientists estimate that one in every 200 women carries defects in her mtDNA. Between one in 2,000 and one in 4,000 babies may be born each year with syndromes caused by these genetic glitches; the syndromes range from mild to severe. In many cases, there is no treatment and the affected child dies early in life.
The entire story is here.
NPR News
Originally published October 09, 2013
Here is an excerpt:
Specifically, the research would create an egg with healthy mitochondrial DNA (mtDNA). Unlike the DNA that most people are familiar with — the 23 pairs of human chromosomes that program most of our body processes — mtDNA is the bit of genetic material inside mitochondria, living structures inside a cell that provide its energy.
Scientists estimate that one in every 200 women carries defects in her mtDNA. Between one in 2,000 and one in 4,000 babies may be born each year with syndromes caused by these genetic glitches; the syndromes range from mild to severe. In many cases, there is no treatment and the affected child dies early in life.
The entire story is here.
Sunday, October 20, 2013
Ethics: Taboo genetics
By Ericka Check Hayden
Nature.com
Originally published October 2, 2013
Here is an excerpt:
At the root of this caution is the widespread but antiquated idea that genetics is destiny — that someone's genes can accurately predict complex behaviours and traits regardless of their environment. The public and many scientists have continued to misinterpret modern findings on the basis of this — fearing that the work will lead to a new age of eugenics, preemptive imprisonment and discrimination against already marginalized groups.
“People can take science and assume it is far more determinative than it is — and, by making that assumption, make choices that we will come to regret as a society,” says Nita Farahany, a philosopher and lawyer at Duke University School of Law in Durham, North Carolina.
But trying to forestall such poor choices by drawing red lines around certain areas subverts science, says Christopher Chabris of Union College in Schenectady, New York. Funding for research in some areas dries up and researchers are dissuaded from entering promising fields. “Any time there's a taboo or norm against studying something for anything other than good scientific reasons, it distorts researchers' priorities and can harm the understanding of related topics,” he says.
The entire story is here.
Nature.com
Originally published October 2, 2013
Here is an excerpt:
At the root of this caution is the widespread but antiquated idea that genetics is destiny — that someone's genes can accurately predict complex behaviours and traits regardless of their environment. The public and many scientists have continued to misinterpret modern findings on the basis of this — fearing that the work will lead to a new age of eugenics, preemptive imprisonment and discrimination against already marginalized groups.
“People can take science and assume it is far more determinative than it is — and, by making that assumption, make choices that we will come to regret as a society,” says Nita Farahany, a philosopher and lawyer at Duke University School of Law in Durham, North Carolina.
But trying to forestall such poor choices by drawing red lines around certain areas subverts science, says Christopher Chabris of Union College in Schenectady, New York. Funding for research in some areas dries up and researchers are dissuaded from entering promising fields. “Any time there's a taboo or norm against studying something for anything other than good scientific reasons, it distorts researchers' priorities and can harm the understanding of related topics,” he says.
The entire story is here.
Tuesday, September 10, 2013
Looking to Genes for the Secret to Happiness
By GRETCHEN REYNOLDS
The New York Times
Originally published August 25, 2013
Our genes may have a more elevated moral sense than our minds do, according to a new study of the genetic effects of happiness. They can, it seems, reward us with healthy gene activity when we’re unselfish — and chastise us, at a microscopic level, when we put our own needs and desires first.
(cut)
The volunteers whose happiness was more eudaemonic, or based on a sense of higher purpose and service to others — a small minority of the overall group — had profiles that displayed augmented levels of antibody-producing gene expression and lower levels of the pro-inflammatory expression.
The entire story is here.
The New York Times
Originally published August 25, 2013
Our genes may have a more elevated moral sense than our minds do, according to a new study of the genetic effects of happiness. They can, it seems, reward us with healthy gene activity when we’re unselfish — and chastise us, at a microscopic level, when we put our own needs and desires first.
(cut)
The volunteers whose happiness was more eudaemonic, or based on a sense of higher purpose and service to others — a small minority of the overall group — had profiles that displayed augmented levels of antibody-producing gene expression and lower levels of the pro-inflammatory expression.
The entire story is here.
Monday, August 5, 2013
Mental Illness: It's Not in Your Genes
by KAS THOMAS
BigThink Blog
Originally posted JULY 21, 2013
Even before the Human Genome Project wrapped up in April 2003, scientists have worked overtime to find the gene or genes responsible for autism, schizophrenia, Alzheimer's, ADHD, alcoholism, depression, and other ailments "known" to have major genetic components.
The problem is, many neuropsychiatric ailments that are assumed to have a major genetic component don't seem to have one.
More than a decade after the sequencing of the human genome, there is still no reliable genetic test for autism, Alzheimer's, schizophrenia, or any other major neuropsychiatric disorder (except for Huntington's disease, for which there was already a test, prior to the Human Genome Project).
The entire story is here.
Thanks to Lamar Freed for this information.
BigThink Blog
Originally posted JULY 21, 2013
Even before the Human Genome Project wrapped up in April 2003, scientists have worked overtime to find the gene or genes responsible for autism, schizophrenia, Alzheimer's, ADHD, alcoholism, depression, and other ailments "known" to have major genetic components.
The problem is, many neuropsychiatric ailments that are assumed to have a major genetic component don't seem to have one.
More than a decade after the sequencing of the human genome, there is still no reliable genetic test for autism, Alzheimer's, schizophrenia, or any other major neuropsychiatric disorder (except for Huntington's disease, for which there was already a test, prior to the Human Genome Project).
The entire story is here.
Thanks to Lamar Freed for this information.
Sunday, June 16, 2013
Why do identical twins end up having such different lives?
Their genes are exactly the same, so why don't identical siblings' lives follow more similar patterns? The scientist behind a pioneering 21-year study believes he has the answer
By Robin McKie
The Guardian/The Observer
Originally published June 1, 2013
Here is one excerpt:
"We now began to look not at the similarities between identical twins but the differences. It was a shift in perception really. Our work shows that the heritability of your age at death is only about 25%. Similarly, there is only a 30% chance that if one identical twin gets heart disease the other one will as well, while the figure for rheumatoid arthritis is only about 15%."
It is a baffling observation: individuals with identical genes and often very similar conditions of upbringing but who experience very different life outcomes. What could be the cause? The answer, says Spector, came to him in a Damascene moment four years ago. The causes of these differences were due to changes in the human epigenome, he realised.
"Essentially, epigenetics is the mechanism by which environmental changes alter the behaviour of our genes," he says. "This involves a process known as methylation, which occurs when a chemical known as methyl, which floats around the inside of our cells, attaches itself to our DNA. When it does so, it can inhibit or turn down the activity of a gene and block it from making a particular version of a protein in our bodies." Crucially, all sorts of life events can affect DNA methylation levels in our bodies: diet, illnesses, ageing, chemicals in the environment, smoking, drugs and medicines.
Thus epigenetic changes produce variation in disease patterns. And recent experiments carried out by Spector and his colleagues, in which they have looked at methylation levels in pairs of identical twins, back the theory. "We have studied identical twins who have different tolerances to pain and shown that they have different states of methylation. We have also produced similar results for depression, diabetes and breast cancer. In each case, we have found genes that are switched on in one twin and switched off in the other twin. This often determines whether or not they are likely to get a disease."
Epigenetic changes are not just simple environmental changes, however. They influence a person's genes and can have an effect that can last for two or three generations in extreme cases. For example, studies of the children and grandchildren of pregnant women who endured starvation in the second world war and in China in the 50s have revealed they tended to be smaller and more prone to diabetes and psychosis. These trends are put down to epigenetic changes.
The entire article is here.
Thanks to Ed Zuckerman for this article. The article may change the way that a psychologist thinks about twin study research indicating biological bases of psychopathology.
By Robin McKie
The Guardian/The Observer
Originally published June 1, 2013
Here is one excerpt:
"We now began to look not at the similarities between identical twins but the differences. It was a shift in perception really. Our work shows that the heritability of your age at death is only about 25%. Similarly, there is only a 30% chance that if one identical twin gets heart disease the other one will as well, while the figure for rheumatoid arthritis is only about 15%."
It is a baffling observation: individuals with identical genes and often very similar conditions of upbringing but who experience very different life outcomes. What could be the cause? The answer, says Spector, came to him in a Damascene moment four years ago. The causes of these differences were due to changes in the human epigenome, he realised.
"Essentially, epigenetics is the mechanism by which environmental changes alter the behaviour of our genes," he says. "This involves a process known as methylation, which occurs when a chemical known as methyl, which floats around the inside of our cells, attaches itself to our DNA. When it does so, it can inhibit or turn down the activity of a gene and block it from making a particular version of a protein in our bodies." Crucially, all sorts of life events can affect DNA methylation levels in our bodies: diet, illnesses, ageing, chemicals in the environment, smoking, drugs and medicines.
Thus epigenetic changes produce variation in disease patterns. And recent experiments carried out by Spector and his colleagues, in which they have looked at methylation levels in pairs of identical twins, back the theory. "We have studied identical twins who have different tolerances to pain and shown that they have different states of methylation. We have also produced similar results for depression, diabetes and breast cancer. In each case, we have found genes that are switched on in one twin and switched off in the other twin. This often determines whether or not they are likely to get a disease."
Epigenetic changes are not just simple environmental changes, however. They influence a person's genes and can have an effect that can last for two or three generations in extreme cases. For example, studies of the children and grandchildren of pregnant women who endured starvation in the second world war and in China in the 50s have revealed they tended to be smaller and more prone to diabetes and psychosis. These trends are put down to epigenetic changes.
The entire article is here.
Thanks to Ed Zuckerman for this article. The article may change the way that a psychologist thinks about twin study research indicating biological bases of psychopathology.
Saturday, May 11, 2013
Genetic Testing Recommendations Contradict Professional Ethics, Experts Say
By Rebecca Voelker
News@JAMA
Originally posted May 9, 2013
Recent recommendations that advise laboratories and physicians how to tell patients about incidental findings in genetic tests contradict ethical clinical practice, according to bioethicists at Stanford University’s Center for Biomedical Ethics in California.
A working group convened by the American College of Medical Genetics and Genomics (ACMG) released recommendations in March saying that clinical DNA sequencing laboratories should test for a list of specific genetic abnormalities regardless of the clinical reason for testing and report the results to the patient’s physician. In turn, the recommendations say physicians have a responsibility to give patients all the findings, even if patients don’t want results that aren’t relevant to the condition for which they were tested.
The ACMG recommends that patients who undergo genome sequencing be tested for conditions including various forms of cancer, cardiomyopathy, and familial hypercholesterolemia in addition to their primary medical condition.
Recommending that patients not be able to choose whether they want to receive incidental findings, even when test results suggest adult-onset conditions in children, “contradicts ethical clinical practice in general,” wrote bioethicists Megan Allyse, PhD, and Marsha Michie, PhD, in the journal Trends in Biotechnology.
The entire article is here.
The ACMG recommendations are here.
News@JAMA
Originally posted May 9, 2013
Recent recommendations that advise laboratories and physicians how to tell patients about incidental findings in genetic tests contradict ethical clinical practice, according to bioethicists at Stanford University’s Center for Biomedical Ethics in California.
A working group convened by the American College of Medical Genetics and Genomics (ACMG) released recommendations in March saying that clinical DNA sequencing laboratories should test for a list of specific genetic abnormalities regardless of the clinical reason for testing and report the results to the patient’s physician. In turn, the recommendations say physicians have a responsibility to give patients all the findings, even if patients don’t want results that aren’t relevant to the condition for which they were tested.
The ACMG recommends that patients who undergo genome sequencing be tested for conditions including various forms of cancer, cardiomyopathy, and familial hypercholesterolemia in addition to their primary medical condition.
Recommending that patients not be able to choose whether they want to receive incidental findings, even when test results suggest adult-onset conditions in children, “contradicts ethical clinical practice in general,” wrote bioethicists Megan Allyse, PhD, and Marsha Michie, PhD, in the journal Trends in Biotechnology.
The entire article is here.
The ACMG recommendations are here.
Tuesday, March 5, 2013
Sale of personal gene data condemned as 'unethical and dangerous'
Critics say companies could acquire personal information that would identify NHS patients without their consent
By Jaime Doward
The Observer
Originally published February 16, 2013
Private firms will soon be able to buy people's medical and genetic data without their consent and, in certain cases, acquire personal information that might enable them to identify individuals.
The revelation, which contradicts government claims that such material would be completely anonymous, has raised fears that pharmaceutical firms and insurance companies will be able to determine the identities of people susceptible to particular diseases. It has prompted claims that fundamental changes to the use of NHS patient data are being introduced without adequate public debate or regulatory oversight.
The government is keen for Britain to be at the forefront of the genetic revolution, a potential multibillion-pound industry. Last year David Cameron launched a £100m scheme to map the genomes of up to 100,000 people, saying it would help to save lives by delivering new treatments. The move was seen as the first step in the construction of a national human genome database.
Under the scheme, firms would be able to access the information at a cost, but ministers insist that all data will be strictly anonymous. However, material released under the Freedom of Information Act reveals that firms can invoke an appeal process to demand "patient-identifiable data", such as age and postcode.
The entire story is here.
By Jaime Doward
The Observer
Originally published February 16, 2013
Private firms will soon be able to buy people's medical and genetic data without their consent and, in certain cases, acquire personal information that might enable them to identify individuals.
The revelation, which contradicts government claims that such material would be completely anonymous, has raised fears that pharmaceutical firms and insurance companies will be able to determine the identities of people susceptible to particular diseases. It has prompted claims that fundamental changes to the use of NHS patient data are being introduced without adequate public debate or regulatory oversight.
The government is keen for Britain to be at the forefront of the genetic revolution, a potential multibillion-pound industry. Last year David Cameron launched a £100m scheme to map the genomes of up to 100,000 people, saying it would help to save lives by delivering new treatments. The move was seen as the first step in the construction of a national human genome database.
Under the scheme, firms would be able to access the information at a cost, but ministers insist that all data will be strictly anonymous. However, material released under the Freedom of Information Act reveals that firms can invoke an appeal process to demand "patient-identifiable data", such as age and postcode.
The entire story is here.
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