In the age of social media, parents are sharing personal information about their children with the general public. Sharenting is “the phenomenon of sharing photographs, embarrassing stories and other personal information about one’s children online” (https://scholarship.law.ufl.edu/cgi/viewcontent.cgi?article=1796&context=facultypub). Parents might not realize the consequences of this disclosure. Let’s take a closer look at what happens when that disclosure is their children’s personal health information.
In America, we have strong traditions in regard to the rights of parents being the controlling force in the upbringing of their children. We also have a strong legal tradition that allows parents to determine their children’s best interest. But unfortunately parents are not always the best protectors of their children. This is especially true with disclosures online. There is an infinite effect with online information because of the ongoing rediscovery on the Internet and social media. Even when parents have good intentions they might not realize the harm they are doing when they share personal information about their children online. The outcome is that children have lost control of their digital footprint (https://scholarship.law.ufl.edu/cgi/viewcontent.cgi?article=1796&context=facultypub).
When it comes to personal health information, it is even more disturbing. This disclosure can come back to haunt children in later years. How does this happen? Even when people think their health information is protected, it is not always the case. For example, health information is shared with data brokers, insurance companies, law enforcement, and various governmental agencies. Your health information is not protected under HIPAA with these agencies (read the fine print when you sign these forms). Also, people unknowingly share their information with third-party sites. Now this is happening with DNA testing and what can be more personal than our DNA?
The popularity of discovering one’s ancestry has skyrocketed, but do people realize they have become part of open-source genealogy databases? In addition to discovering one’s ancestry, some people are choosing to work directly with companies who carry out genetic testing for determining a person’s risk for certain diseases such as Parkinson’s disease, Alzheimer’s, cancers, etc. You do not need a physician’s prescription; a simple saliva test kit is submitted, and the results are sent back directly to the customer. They can also test for genetic mutations. Parents are now bypassing pediatricians to have their children’s DNA tested, and at times this is done against the recommendations of the doctor (https://www.nytimes.com/2020/01/02/opinion/dna-test-privacy-children.html?nl=todaysheadlines&emc=edit_th_200103?campaign_id=2&instance_id=14881&segment_id=20009&user_id=2881cad8f09d5d04d1ada80303b1628d®i_id=913205490103).
The problem with handling this information becomes twofold:
Children are losing their right to privacy, and ironically their parents are carrying out this exposure. When it comes to genetic testing, children are experiencing the added burden of learning about something they don’t have the maturity to handle. Although we have strong traditions about the parenting role in this country, shouldn’t children have the opportunity to learn more about their genetics only when and if they are interested?
Charlotte Michos is a clinical nurse specialist who values personal-centered care and serves as a Healthcare Consultant in helping others make informed decisions. For more information, email her or call (845) 548-5980.
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