Latest news with #DivisionofMedicalEthics
Medscape
13-05-2025
- Health
- Medscape
Conscience Laws Detrimental to Medicine: Ethicist
This transcript has been edited for clarity. Hi. I'm Art Caplan. I'm at the Division of Medical Ethics at NYU Grossman School of Medicine. Of all things these days, conscience and the right to have conscientious objection has become a huge and divisive issue in medicine. As I'm sure many of you watching are aware, a number of states have passed conscience laws trying to grant rights to doctors to refuse to do things that they don't agree with morally. That's because many federal laws, such as the EMTALA law, which requires treatment in emergency rooms, have said that you have to do things that will stabilize a patient, and that might involve in some instances, an abortion, let's say, because the woman's life is in danger. Conscience laws that some states — red states — have put through basically say, no, you don't have to do that , a nd your conscience should take precedence both over that federal law and over what the patient might need. What's best is you do what is moral for you, and we're going back that decision up, particularly if it agrees with what we, as the state legislature in conservative red states, want to see happen. There are also blue state efforts to say that my state has banned something by law, and I don't want to see somebody put in a conscience statute so that I can do things that the legislature has said they're not going to allow, such as transgender surgery. Conscience has become a strange battleground because people are using it to try to evade laws thatthey deem either too restrictive when there are approved medical treatments but doctors don't want to do them, or at the other end are way too liberal, forcing somebody to do something by law that, as a matter of their values as a physician, they don't want to do. How do we sort all this out and where does conscienceleave us, as a physician or as a nurse, when dealing with patients? My view is very simple. I don't believe that state legislature should be telling doctors what to do or not to do when existing, approved medical treatments are out there. If physician associations and groups agree that there are instances in which abortion is indicated, if there are situations in whichphysician groups agree that it is appropriate to remove a feeding tube from a dying person, if physician groups have consensus and say that the data show day-after pills are safe and they can be administered in a doctor's office or even by telemedicine, then I think it should be doctors who decide what's going to happen with their patients. I think we've seen way too much push, both from the left and the right, to intervene with doctor-patient relationships. You may recall Florida once had a law proposed that said you can't discuss gun safety with your patients. That seems ludicrous to me. The legislature shouldn't be interfering in a public health matter like that. Idaho and some other states are considering laws that say they're going to ban the use of messenger RNA (mRNA vaccines). That means they don't like COVID vaccination, but mRNA vaccines are the future of cancer treatment. To put it another way, I'd rather have a doctor deciding what's appropriate for their patient than a person who's a real estate agent, has worked in farming, or has been a lawyer deciding, as a state legislator, what they think appropriate and medically useful care is going to be. Conscience is important. There is no doubt that we want to respect what doctors and nurses think is right and wrong, but what ought to come before conscience is the patient's best interest. If something controversial is still in the patient's best interest, that's what I think physicians, nurses, and medical associations all ought to be fighting for. Let's try to keep the state legislator out of the waiting room. Let's try to minimize the impact of politics on the practice of medicine, as it's going too far under the banner of conscience. Let's restore the integrity and, if you will, the sanctity of the doctor-patient relationship. I'm Art Caplan. I'm at NYU Grossman School of for watching.
Al Jazeera
26-03-2025
- Business
- Al Jazeera
Why are users of 23andMe being urged to delete their data?
Users of 23andMe, a direct-to-consumer genetic testing site, are being urged to delete their personal data from the website following the company's bankruptcy filing in the United States on March 23. Here's why it matters. If 23andMe's bankruptcy goes through, it will soon be up for sale after years of financial troubles. Since its founding in 2006, the company has amassed the genetic information of about 15 million users – a dataset that is now potentially up for sale to the highest bidder. 23andMe offered services related to family ancestry and genetic traits, gradually expanding into tests for genetic predispositions to cancer and other diseases. More recently, the company sought to pivot into drug research. In 2021, the company went public with a $3.5bn valuation, partly to raise funds for this new direction. However, tough economic conditions and declining sales left the company financially unstable. In October, it laid off 40 percent of its workforce and now faces delisting from the NASDAQ after its stock price fell below $1 this week. In an open letter to its customers, 23andMe insisted that the bankruptcy 'does not change how we store, manage, or protect customer data', adding that any potential buyer would be 'required to comply with applicable law with respect to the treatment of customer data'. Despite this promise, the attorneys general of New York and California have urged residents to log onto the site and delete their data. Arthur Caplan, the head of the Division of Medical Ethics at the NYU Grossman School of Medicine, expressed scepticism about 23andMe's promises. 'If 23andMe really goes bankrupt and someone buys its assets, then what's going to happen is their promises of confidentiality go out the window. The buyer isn't bound to follow what 23andMe said,' Caplan told Al Jazeera. 'They can share data, and given the fact that DNA analysis is even better now than it was 10 years ago when all this collection started, they might be able to identify people.' Unlike the European Union, the US lacks a comprehensive federal data privacy law. Instead, data protection relies on a patchwork of state laws and industry-specific regulations. Like other DNA home-testing companies, 23andMe is not covered by the main piece of legislation governing the privacy of health records, the US Health Insurance Portability and Accountability Act – better known as HIPAA – because it is not classified as a medical company. Data from companies like 23andMe can also be obtained by law enforcement under a warrant or subpoena. In one of the most high-profile cases involving a home-testing service and the authorities, California investigators in 2017 used an unnamed genealogy website to identify Joseph James DeAngelo as the 'Golden State Killer,' a prolific serial murderer who was active between the mid-1970s and mid-1980s. Even before its bankruptcy, 23andMe faced criticism for its data security practices. In 2023, hackers broke into the company's systems and accessed the information of nearly 7 million users. The company was later forced to pay $30m in a class action lawsuit over the breach. The company's scientific claims have also been questioned. Caplan said 23andMe's claim that it can reveal meaningful information about ethnic heritage is misleading because DNA can only provide a limited window into someone's ancestry. 'It didn't make sense to me that you could find out your ancestry from a genetic test because much of the information needed, including where your ancestors were living and what groups they were mingling with 200 years ago, we just don't know,' Caplan said. 'Genes do not sort out by cultural categories like Lithuanian or Panamanian. There's no Costa Rican gene.' 'I always thought the company was collecting the DNA because it wanted to sell it for research,' Caplan added. 'The whole idea of ancestry testing and finding out about your past was almost a bait and switch: 'We'll give you this cool information if you give us your DNA.'' As part of its bankruptcy proceedings, 23andMe has announced a 45-day bidding period for its assets. Former CEO and co-founder Anne Wojcicki has resigned from her position to submit her own bid for the company. 'We've had many successes, but I equally take accountability for the challenges we face today,' Wojcicki said in a post on X on Monday. 'There is no doubt that the challenges faced by 23andMe through an evolving business model have been real, but my belief in the company and its future is unwavering.' Since last year, Wojcicki has submitted several offers to a special committee of independent directors to take the company private, but those were rejected over share-price concerns. If you're concerned about your data, here's how you can delete it:
