What is the “proper” amount of freedom of choice for patients in medicine?

What if the treatments in question are experimental and come with their own baggage of associated risks, personal costs, and potential costs to society?

More broadly, do patients have a fundamental right to medical choice?

These questions seem particularly appropriate today on a number of fronts including Right To Try laws and vaccines as well as emerging stem cell and other biomedical technologies. The recent measles outbreaks including the one sparked at Disneyland are warning signs of what harm is awaiting us if the choice to opt out of vaccinations continues to be available to the general public. The California Senate today passed the mandatory vaccination bill. Assembly lawmakers are now weighing the bill.

As we discussed at our recent UCD Stem Cell Ethics Symposium, that phrase “a fundamental right” is very powerful. A potential benefit of medical freedom would be the power to make choices that may benefit oneself or one’s loved ones that otherwise would not be available if solely decided on a collective, governmental level.

For example, there may be a new experimental drug that a doctor and patient together decide is worth the risk to try, but the FDA has not approved it or even given the green light for a clinical trial on it. In principle, that drug might help the patient or it might hurt or even kill the patient. Advocates of medical freedom believe patients should broadly be allowed to evaluate and take such risks with their own personal physician if they so choose. They see the FDA as an obstacle to their freedom.

As someone who has faced a very serious form of prostate cancer, I get the sense that being in a serious medical situation can change one’s views. Everything feels different when you are faced with a potentially lethal medical diagnosis yourself or for a loved one. Sometimes it’s not that simple though.

As individuals our freedom and desire for choices can conflict with a greater good. For example, as a biomedical scientist and parent I do not believe that childhood vaccination should be optional. While there is no compelling evidence that vaccination is harmful beyond for that tiniest fraction of those who have severe reactions or pre-existing immune diseases, there is profound evidence–I would go so far as to say proof–of powerful benefits to both individuals and society as a whole of vaccination.

Some parents feel that the best choice is not to have their kids vaccinated. Should they be allowed that choice? I don’t think so in the sense of the unvaccinated kids still being allowed to go to school where they can interact with and potentially harm other children via infectious diseases. Not being vaccinated also poses risks as an adult for other workers in the workplace.

While some might say that mandatory vaccination is “anti-freedom” and that there are costs to such governmental mandates, from my view the benefits dramatically outweigh those risks. But some argue a libertarian view that there is a price for that in loss of free choice.

Another example of a hotly debated area today that shares some of the same issues is emerging stem cell technology. Some say that patients should be free to entirely make their own choices as to whether to get an experimental, potentially risky stem cell intervention. The argument is also in conjunction often made that patients are in the best position with their doctors to make such decisions. “Get the government out of my doctor’s office”, might be the clarion call for those folks.

These kinds of “freedom-based medical decisions”, as we might call them, have possible societal costs even if they do not involve highly contagious infectious diseases. If companies sell unapproved stem cell treatments, then patients buying those treatments are at the same time as they think they are trying to help themselves, also are undermining the authority of the FDA more generally and in that way indirectly putting future potential patients at risk. As much as I think the community that reads this blog can agree that the FDA is imperfect and could benefit from reforms, the FDA performs a very difficult, complex and crucial mission, without which we’d face medical chaos leading to great harm.

It seems appropriate at this point to also point out that many stem cell clinics also sell these interventions to children. As such, if you believe that people should be allowed to get any stem cell therapy they want, keep in mind that there are possible broader consequences to you making that choice beyond undermining the FDA mission. One might say, for instance, that you are supporting a sketchy company that is putting other people at risk. Some of those other potential patients may not be in the same position as you to make decisions about risks. They may be kids or they may be less educated than you. By giving this stem cell business your money you are enabling them to put others into risky situations.

As much as some people might advocate for specific stem cell clinics selling unapproved stem cell treatments, I’d say that within this community most of us also can point to some clinics and doctors (and fake doctors) that are truly frightening and dangerous. Even if reasonable people can disagree on broader issues regarding the appropriate level of governmental regulation and freedom of choice, relentlessly attacking the FDA for the cause of near universal freedom of medical choice for investigational stem cell treatments poses the risk of giving the wildly dangerous clinics a freer hand. Sometimes what we believe is best for ourselves cannot be viewed only in a bubble.

The bottom line is that freedom of medical choice for an individual is far more complicated than it might seem and it is easy to oversimplify it. The reality is that our medical freedom and decisions have impact on others. I don’t see that we in the America, for example, have a fundamental right to medical choice based on The Constitution. Our medical rights and ability to make health-care related choices change over time too.

Should there be a constitutional amendment for a right to freedom of medical choice?What’s the best goal for these rights (or lack thereof) even if not a constitutional right for the immediate future? How much freedom in this area is best in the longer term?

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