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Welcome to the nexus of ethics, psychology, morality, technology, health care, and philosophy
Showing posts with label Genetic Risk. Show all posts
Showing posts with label Genetic Risk. Show all posts

Wednesday, August 22, 2018

Has Genetic Privacy Been Strained By Trump's Recent ACA Moves?

Michelle Andrews
www.npr.org
Originally posted July 11, 2018

Here is an excerpt:

However, if you develop symptoms of a disease or are diagnosed with a medical condition, GINA no longer protects you. That's where the Affordable Care Act steps in. It prohibits health plans from turning people down or charging them more because they have a pre-existing condition.

"GINA did something good, and the ACA was the next important step," said Sonia Mateu Suter, a law professor at George Washington University who specializes in genetics and the law.

The Trump administration put those additional ACA protections in doubt last month when it said it won't defend that part of the law, which is being challenged in a lawsuit brought by the attorneys general of 20 states.

The administration said that since the penalty for not having health insurance has been eliminated starting in 2019, the provisions that guarantee coverage to people with pre-existing conditions and prohibit insurers from charging them higher premiums should be struck down as well.

The protections are a priority with many voters. In a June poll by the Kaiser Family Foundation, two-thirds of voters said that continuing protections for people with pre-existing conditions will be either the single most important factor or very important in determining their vote in this fall's elections.

The information is here.

Thursday, January 4, 2018

Non-disclosing preimplantation genetic diagnosis: Questions, challenges and needs for guidelines

Robert Klitzman
Fertility and Sterility
Originally published December 6, 2017

Consider This:

Non-disclosing Preimplantation Genetic Diagnosis (ND-PGD) is performed, but controversial, raising many questions.  It has been used when prospective parents at-risk for mutations highly associated with serious disease (especially Huntington’s disease [HD](1)), do not want to know their mutation-status, but wish to ensure that no mutation-containing embryos are transferred.  Physicians would then transfer only mutation-negative embryos, and not tell the patient whether any mutation-positive embryos were identified.  In 2002, Stern et al. described using ND-PGD successfully with 10 couples.1 

Pros and cons of non-disclosing PGD

Several advantages and disadvantages have been articulated.  Few individuals at-risk for HD want to learn their mutation-status.  Caused by an autosomal dominant mutation, the disease lacks treatment, and leads to debilitating neurological and psychiatric symptoms and death, generally in the 4th-5th decade of life.  Many at-risk individuals see a mutation-positive test result as a “death sentence,” and only 3%-21% of at-risk adults get tested (e.g. only 3-5% in Sweden).(2)

Though the patient may not be infertile, ND-PGD requires IVF, which has certain risks.  Yet many patients may see the procedure’s benefits as outweighing these dangers.  Misdiagnoses can also occur, but prenatal confirmatory tests can be performed.

The article is here.

Friday, July 1, 2016

Predictive genetic testing for neurodegenerative conditions: how should conflicting interests within families be managed?

Zornitza Stark, Jane Wallace, Lynn Gillam, Matthew Burgess, Martin B Delatycki
J Med Ethics doi:10.1136/medethics-2016-103400

Abstract

Predictive genetic testing for a neurodegenerative condition in one individual in a family may have implications for other family members, in that it can reveal their genetic status. Herein a complex clinical case is explored where the testing wish of one family member was in direct conflict to that of another. The son of a person at 50% risk of an autosomal dominant neurodegenerative condition requested testing to reveal his genetic status. The main reason for the request was if he had the familial mutation, he and his partner planned to utilise preimplantation genetic diagnosis to prevent his offspring having the condition. His at-risk parent was clear that if they found out they had the mutation, they would commit suicide. We assess the potential benefits and harms from acceding to or denying such a request and present an approach to balancing competing rights of individuals within families at risk of late-onset genetic conditions, where family members have irreconcilable differences with respect to predictive testing. We argue that while it may not be possible to completely avoid harm in these situations, it is important to consider the magnitude of risks, and make every effort to limit the potential for adverse outcomes.

The article is here.

Tuesday, May 27, 2014

Are we ready for a prenatal screening test for autism?

A blood test for diagnosing autism is becoming a realistic possibility, but the ethical implications are profound

By David Cox

Originally published May 1, 2014

Here are two excerpts:

One approach is to compare blood samples from autism patients and healthy individuals and search for what is known as a protein fingerprint – a set of protein levels that is consistently and markedly different in people with autism. So far this has been done relatively successfully in Asperger's syndrome, forming the basis of a blood test that can diagnose the disorder with 80% accuracy, and there are hopes this feat can soon be replicated for autism disorder.

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"The whole ethos behind medicine is to do no harm and if the test is only 80% accurate, it means a proportion of people will be told they have the condition when they don't, so you've raised anxieties unnecessarily. Equally if the test is missing people, then they'll be going away thinking I'm fine when they could be getting support."

Whether measuring protein levels alone should ever be sufficient for a diagnosis is also open to question. Like all neuropsychiatric conditions, autism has varying degrees of severity, meaning some patients require constant care while those with "high-functioning autism" are capable of living independently, adapting to society around them and holding down a job. Right now, such a test would merely pool everyone with autism into the same category. Should we be intervening at all in some cases?

The entire story is here.

Wednesday, February 19, 2014

Ethics Questions Arise as Genetic Testing of Embryos Increases

By GINA Kolata
The New York Times
Originally posted February 3, 2014

Here is an excerpt:

Genetic testing of embryos has been around for more than a decade, but its use has soared in recent years as methods have improved and more disease-causing genes have been discovered. The in vitro fertilization and testing are expensive — typically about $20,000 — but they make it possible for couples to ensure that their children will not inherit a faulty gene and to avoid the difficult choice of whether to abort a pregnancy if testing of a fetus detects a genetic problem.

But the procedure also raises unsettling ethical questions that trouble advocates for the disabled and have left some doctors struggling with what they should tell their patients.

The entire story is here.

Sunday, February 2, 2014

The Distinction Between Antisociality And Mental Illness

By Abigail Marsh
Edge.org
Originally published January 15, 2014

Here is an excerpt:

Cognitive biases include widespread tendencies to view actions that cause harm to others as fundamentally more intentional and blameworthy than identical actions that happen not to result in harm to others, as has been shown by Joshua Knobe and others in investigations of the "side-effect effect", and to view agents who cause harm as fundamentally more capable of intentional and goal-directed behavior than those who incur harm, as has been shown by Kurt Gray and others in investigations of distinction between moral agents and moral patients. These biases dictate that an individual who is predisposed to behavior that harms others as a result of genetic and environmental risk factors will be inherently viewed as more responsible for his or her behaviors than another individual predisposed to behavior that harms himself as a result of similar genetic and environmental risk factors. The tendency to view those who harm others as responsible for their actions, and thus blameworthy, may reflect seemingly evolved tendencies to reinforce social norms by blaming and punishing wrongdoers for their misbehavior.

The entire blog post is here.

Friday, January 10, 2014

Screening Newborns For Disease Can Leave Families In Limbo

By Nell Greenfieldboyce
NPR Health News
Originally posted December 23, 2013

For Matthew and Brianne Wojtesta, it all started about a week after the birth of their daughter Vera. Matthew was picking up his son from kindergarten when he got a phone call.

It was their pediatrician, with some shocking news. Vera had been flagged by New York's newborn screening program as possibly having a potentially deadly disease, and would need to go see a neurologist the next day.

Like every state, New York requires that newborns get a small heel prick so that a few drops of blood can be sent to a lab for testing. The idea is to catch health problems that could cause death or disability without early intervention.

But in recent years, patient advocacy groups have been pushing states to adopt mandatory newborn screening for more and more diseases, including ones that have no easy diagnosis or treatment.

One of those is Krabbe disease, a rare and devastating neurological disorder.

In 2006, New York became the first state to screen for Krabbe, and until recently it was the only state to do so. Screening for this disease is expanding, even though some experts say the treatment available doesn't seem to help affected children as much as was initially hoped — and testing can put some families in a kind of fearful limbo.

The entire story is here.

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.

Sunday, September 2, 2012

Genes Now Tell Doctors Secrets They Can’t Utter

By Gina Kolata
The New York Times
Originally 25, 2012

Dr. Arul Chinnaiyan stared at a printout of gene sequences from a man with cancer, a subject in one of his studies. There, along with the man’s cancer genes, was something unexpected — genes of the virus that causes AIDS.

It could have been a sign that the man was infected with H.I.V.; the only way to tell was further testing. But Dr. Chinnaiyan, who leads the Center for Translational Pathology at the University of Michigan, was not able to suggest that to the patient, who had donated his cells on the condition that he remain anonymous.

In laboratories around the world, genetic researchers using tools that are ever more sophisticated to peer into the DNA of cells are increasingly finding things they were not looking for, including information that could make a big difference to an anonymous donor.

The question of how, when and whether to return genetic results to study subjects or their families “is one of the thorniest current challenges in clinical research,” said Dr. Francis Collins, the director of the National Institutes of Health. “We are living in an awkward interval where our ability to capture the information often exceeds our ability to know what to do with it.”

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Such ethical quandaries grow more immediate year by year as genome sequencing gets cheaper and easier. More studies include gene sequencing and look at the entire genome instead of just one or two genes. Yet while some findings are clear-cut — a gene for colon cancer, for example, will greatly increase the disease risk in anyone who inherits it — more often the significance of a genetic change is not so clear. Or, even if it is, there is nothing to be done.

Friday, August 5, 2011

Prescription pain medication addiction prevalent among chronic pain patients

News Release

A new study by Geisinger Health System researchers finds a high prevalence of prescription pain medication addiction among chronic pain patients. In addition, researchers found that the American Psychiatric Association’s (APA) new definition of addiction, which was expected to reduce the number of people considered addicts who take these medicines, actually resulted in the same percentage of people meeting the criteria of addiction.

Published in the Journal of Addictive Diseases, the study found that 35 percent of patients undergoing long-term pain therapy with opioids like morphine, OxyContin, Percocet and Vicodin, meet the criteria for addiction.

“Most patients will not know if they carry the genetic risk factors for addiction,” said study lead Joseph Boscarino, senior investigator II, Geisinger Health System. “Improper or illegal use of prescription pain medication can become a lifelong problem with serious repercussions for users and their families.”
Boscarino added that “genetic predisposition to addiction further exacerbates the risks associated with misuse of prescription pain medication.”

Using electronic health records, a random sample of outpatients undergoing long-term opioid therapy for non-cancer pain was identified and 705 participants completed telephone interviews from August 2007 through November 2008.

When comparing the APA’s newly revised criteria for addiction with the old criteria, researchers were surprised to find the prevalence of and risk factors for addiction to be virtually the same. It was determined that different symptoms now qualify the same patients for inclusion who would have been excluded under the previous classification system.

The study states that pain medication addiction often happens in people under 65, with a history of opioid abuse, withdrawal symptoms and substance abuse treatment. Risk factors for severe pain medication addiction also include a history of anti-social personality disorder.

“Ultimately, we hope our research will aid the development of newer classes of medications that don’t negatively impact the brain and therefore avoid addiction entirely,” Boscarino said.

Researchers from New York University also contributed to the study.