3/18/24

How to Share Genetic Mutation Information

I believe very strongly in the Duty to Warn when there is any danger to the life of another person. And that includes sharing information about genetic mutations and potential cancer risks.

Unfortunately, there are medical privacy laws that hinder the sharing of genetic information among family members. That leaves the task to family members who might be unsure of how to approach other genetic relatives about a difficult and complex subject.

materials for sharing information about a genetic muation with other genetic relatives
Sharing information about genetic mutations with relatives who may have inherited the same mutation and who may be at risk of cancer can be a complicated task. It is not an “Oh, by the way.” subject. It requires specific information to help relatives make informed choices and to help them to navigate an often-difficult health care system.

I became a hereditary cancer prevention advocate because those who knew about a BRCA2 mutation in my late wife’s family did not openly and honestly talk about it. Tragically, they did not share the specific information that was needed to prevent her hereditary cancer diagnosis and untimely death.

So as an advocate, I have created a page where I have assembled materials that will help with the task of sharing the most important information with those who might be at risk. Breaking the cycle of hereditary cancer in families starts with open and honest communication.

Knowledge is power!

Here is a link to the page: https://genetionary.org/gene_share/


3/11/24

Ending All Hereditary Cancer

A graphic with a light bulb with the logo of ConnectMyVariant.org inside. Below it is the text: A new way to think about ending all hereditary cancer. Created by Mark A. Hicks, MARKiX.net & genetionary.org

ConnectMyVariant.org is an educational health-focused nonprofit organization that supports individuals and families with inherited disease, such as hereditary cancer, with early detection and prevention efforts.

It also works to increase awareness of the benefits of family outreach among physicians and others who provide preventative care, as well as those in the genealogy community.

Every month I will be sharing an image I have created as a volunteer advocate for ConnectMyVariant to help bring attention to the nonprofit's efforts to connect families and save lives.


 

3/5/24

Your Genetic Relatives & Degrees of Separation Simplified

This is something many people struggle with. Granted, it can be confusing, but it is something very important to know when it comes to hereditary diseases, hereditary cancer, and sharing genetic information with your family. These are the relatives to start with when you have important family health history to share.

A graphic showing the first three degrees of separation among genetic relatives. 1st-degree are parents, siblings, and children. 2nd-degree are grandparents, aunts, uncles, nieces, nephews, grandchildren. 3rd-degree are great-grandparents, first cousins, grand- nieces & nephews, great-grandchildren
Keep in mind that the same disease-risk variant may be carried by numerous relatives separated by many degrees over multiple generations. That’s why knowing and sharing family health history is very important. 

A PDF of this graphic can be downloaded at genetionary.org

It is a companion piece to go along with a DNA graphic I created:

2/27/24

DNA and Inherited Mutations Simplified

 

This is a whimsical take on a very serious subject that, unfortunately, many grown-ups do not grasp. As a hereditary cancer advocate, I have found that many adults don’t really understand basic biology, much less genetics. Add in genetic mutations and cancer, and the mental gears stop turning.
 
I spent a big part of my illustration career creating artwork that helped to visually explain complex scientific concepts to 6 to 9-year-olds. So I thought I’d use those skills to maybe help more people understand genetics and hereditary cancer.
 
I do this with a heavy heart and with the hope that it will help prevent the loss of other precious lives. My wife died of a hereditary cancer that was caused by a BRCA2 mutation and the outright stupidity of others. Her cancer diagnosis and untimely death could have been prevented had her relatives understood genetics and the seriousness of the risk of cancer to other family members and urgently shared gene sequencing information like mature intelligent adults.

Please share. Thank you. A PDF of this graphic can be downloaded at https://genetionary.org/DNA.html

 

 

2/21/24

Tornadoes, Hereditary Cancer, & the Duty to Warn

 Many cancer patients and cancer caregivers liken a cancer diagnosis to having their lives torn apart by a tornado.

As National Cancer Prevention Month winds down, I wanted to share one more thought on how far we still have to go in the quest to prevent cancer.

As a former cancer caregiver, now widower, I can understand comparing a cancer diagnosis to a tornado. Hereditary cancer literally ripped life apart. It absolutely destroyed hopes, dreams, and plans. It changed everything.

While I have never experienced a major tornado, I have experienced a few small ones at various times in my life here in Phoenix. (Yes, we have tornadoes in Arizona. And we even have warning systems in place here.) The last one that tore through my neighborhood happened while I was caring for my late wife as she fought stage 4 hereditary breast cancer. Fortunately, none of the tornadoes directly hit my house. But cancer did.

My wife’s horrible death from cancer was very preventable. The information that could have saved her life was available for years, but it did not get shared. She was never expressly warned of her risk of carrying an inherited mutation and her cancer risk. The Duty to Warn is something I feel very strongly about, be it tornadoes or inherited mutations.

You can read more about what happened to my late wife in a story I wrote for FORCE: Facing Our Risk of Cancer Empowered, https://www.facingourrisk.org/blog/an-individual-doesnt-get-cancer-a-family-does

More to think about:

According to the American Cancer Society, 609,820* people died of cancer in 2023. 10% of all cancers are hereditary. That means over 60,000 cancer deaths possibly could have been prevented if those at risk had been identified through genetic testing prior to diagnosis.

*https://acsjournals.onlinelibrary.wiley.com/doi/full/10.3322/caac.21763

2/13/24

Sharing is Caring

 Broken genes should not lead to broken hearts.
Learn how family communication can help prevent hereditary cancer.

www.connectmyvariant.org

(I created this graphic as a volunteer artist and advocate. And as someone who has suffered a broken heart because genetic information was not shared in my late wife’s family.)

2/2/24

Saying the Quiet Part Out Loud

A friend with a family history of cancer asked their doctor about genetic testing. The doctor’s response? “You don’t want to go down that rabbit hole.” What?! WHAT?!

Genetic testing should be a standard of care to prevent cancer. It saves lives. It would have saved my wife’s life. It’s given my child a chance to live a full life cancer-free.

4 in 5 women with a family history of cancer have not been offered genetic testing. 3 in 4 people eligible for Lynch Syndrome screening have not been tested.

There are hereditary cancers that can be prevented.