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What are the potential benefits and harms of testing for Alpha-1?

Potential benefits:

  • Deciding to stop cigarette smoking, getting help if necessary
  • Choosing never to smoke
  • Avoiding secondhand smoke
  • Avoiding harmful exposures on the job and in the environment
  • Avoiding excessive alcohol use
  • Better conversations with healthcare providers about preventative care and improving health

Potential harms:

  • May be personally unsettling
  • May affect your ability to get life and disability insurance
  • May create stress in your family
  • May increase your personal healthcare costs
What is Alpha-1? – Alpha-1 Foundation

Risks and Benefits of Genetic Testing

In this Reference Guide, we will talk about a number of the benefits associated with being tested for Alpha-1. For instance, knowing you have Alpha-1 can provide you with the motivation to minimize or eliminate your exposure to environmental risk factors. Knowing your diagnosis also allows you and your health care provider to utilize effective, appropriate treatments for Alpha-1 related diseases, should they develop.

Should every adult get tested? Why not test every newborn for Alpha-1? These questions deserve serious consideration because, while there are benefits to testing, there are also risks. For example, there are currently no available treatments for healthy children diagnosed with Alpha-1, and some feel that labeling such a young person with a genetic condition can unnecessarily worry parents and relatives. Some studies have shown that many parents of healthy children diagnosed with Alpha-1 actually wish the testing had never been done.

Other people may feel that being tested for Alpha-1 could put them at risk for genetic discrimination.

Big Fat Reference Guide – AlphaNet